Polymyalgia Rheumatica/Giant Cell Arteritis (PMR/GCA) Survey
Demographics	Additional Comments/Information
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	IT'S BEEN UP AND DOWN.EVEN BEING ON A LOW DOSAGE I AM STILL IN CONSTANT PAIN IN MY NECK AND SHOULDERS. i HAVE ALSO HAD MANY FLARE UPS. I JUST REFUSE TO UP MY STEROIDS.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	If you can get by without taking Prednizone Please, Please do so. It is a miracle drug for the pain, but the side effects weight gain, blurry vision, fatigue depletes your quality of life almost as much as the pain. I am somewhat at a disadvantage due to the fact that I suffered a triamalleour fracture on my right ankle November 2006. It was while I was in the hospital after my surgery that my right arm was very painful. My GP like myself thought it was due to the fall or happened during surgery. Around July of 2007 my left arm got very painful, it was then that my doctor thought I may have PMR. He put me on 50mg of Prednizone for one week to see if the pain would go away. It did within two days. It was wonderful. Then he put me on a daily dose of 25mg/day. April 2008 I am at 18mg/day. My ankle is very very painful still, still swelling. I can't walk properly without limping. So exercise is next to impossible. I have heard that stress can bring on PMR, I think the trauma of the fall on ice while curling,and breaking my ankle caused the uprising of PMR.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	First thought I had a torn rotator cuff in my left shoulder. After 9 months the pain progressed to my right shoulder & neck. My GP sent me to an orthopedic doctor still thinking it was a shoulder injury. The orthopedic doctor (not surgeon) immediatley diagnosed PMR , did blood work & got SED Rates 18 times above normal. I was sent to a Rheumatologist the next day. This past winter the pain decided to settle in my hips & shoulders. I also have the less common side effect of swollen, painful hands. The Rheumatologist, his office, & many PA's he employs have been frustrating. The drugs he tried, prednisone, methotrexate & Arava have either not worked or the side effects have been horrible, especially the Arava.I am still struggling through this and really do not have any advise for others except to share with you some of the things I do that work a little. I rely on naproxen, Sam E with MSM, my herbal/vitamin supplements listed above and some pain killers like Norco. My hot tub helps releve morning stiffness, but for severe night pain in shoulders & neck ice packs really help. I have not been back to the Rheumatologist for 4 months because of the horrible Arava experience and am relying on my GP to help me through this with out specialists as I have no insurance coverage. I fully understand the risks of GCA. I had PMR for 18 months before it was diagnosed.I started my 3rd year of PMR in January. The pain & fatigue are really hard to deal with as I am self employed teaching dance, owning & operating a large dance studio.I have no choice other than to struggle through.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Tapering prednisone usually involves withdrawal symptoms each time. These include severe aching, fatigue, shakiness and moodiness. If the taper is successful the symptoms leave in up to two weeks. If not the symptoms are probably PMR and one may need to increase the dosage and try again later. One of the most disorienting characteristics of PMR is its unpredictable changeability. New symptoms in new places, old symptoms in new places; up one day, down the next. Makes it difficult to pace yourself. I have found that dropping sugar from my diet is helpful.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I find that if I go to gym I have less discomfort in my thighs. I sit at work most of the day and my thighs are the most affected along with back. I sometimes look forward to gym. I have only gained about 7 pounds over 1 year since I push myself to be active. I enjoy golf and will do it as much as I can and rest when I have to... I always take care not to overdue anything. I have had problems getting to a low dose of Prednisone but now know to do it very slowly. I appreciate the message boards and have tried to join them at home but unable to have it work. Thanks
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I was taking Actonel and initially thought the sudden muscle/joint/bone pain/stiffness was a bad reaction to that drug. Stopped taking it and gradually improved. Then suddenly I had all the symptoms again about 14 months after the initial attack. It took several months to get in to see specialists and during that time I took mobic (no result) and then diclofenac (no result). Rheumatologist started me on prednisone 15 for a week and then 10 mg) end of June 07. In October Relafen (750) was added - big sudden weight gain - in January dropped to 7.5 mg prednizone, Feb 5 mg and March 5 one day 2.5 the next. could not tolerate so back to 5 mg. In April another 750 of relafen - another sudden weight gain - and no indication it is effective. Just get more and more fatigued although the pain and stiffness is has mained about a level point for several months. In February I added Fosomax and after three weeks discontinued as pain stiffness was building up again. I have now started Boniva with much misgivings as I am not convinced that Actonel was not the start of this whole thing.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I was diagnosed about 2 months ago but have been dealing with symptons for over a year and a half..........had lots of infections, ect. and experienced flu like symptons several times but did not realize it was a flareup of PMR with lots of aches and pains that persisited. Started taking 40 mg. of prednisone for a week, then 30 mg and I am now down to 10 mg. I had to go to pain clinic last week for an injection in the neck area and shoulder due to much continuous pain in that area . It helped break the pain cycle. I had lots of problems from the prednisone........mouth blisters, puffy face, blurred vision and severe fatigue (from PMR or prednisone?) I am beginning to feel better with just taking 10 mg. and I hope this will keep it under control. Thank you for doing this survey.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I suffered from PMR for 7 years. I have been in remission 4 years. It started immediately after my last period in my legs iniatially and then spread everywhere
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Try to remain optimistic. I had high hopes thatPMR would be gone after 18 months but unfortunately it isn't. I have had to increase prednisilone after a recurrence of severe symtoms. I would love to walk across the fields with my dog again but at the moment this is not possible. When I feel really low I look around and find lots of people worse off than me e.g. 51 year old neghbour in final stages of cancer, friend with rhuematoid arthiritis (at least PMR does not damage joints structures permanently).
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Prior to contacting PMR suffered years of emotional stress due to bullying and discrimination at work. Also first symptoms appeared a week after a steel door at work which I was opening fell in and I crashed on top of it, I then had to move it myself while still in a state of shock. Dr says this is not connected but I am not convinced. I still work full time in a demanding job but I am not sure if it is the steroids keeping me going as I seem to have more energy than before I became ill.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	High doses of Vitamin C (500 mg 2x or 3x per day) seemed to bring a turning point in my disease. Now at the point where I don't know if I have PMR any more, or am just suffering symptoms of prednisone withdrawal, even at a reduction of only .5 mg per month. Also take Omega (fish) oil daily. Found that prednisone caused blood sugar swings that affected my vision (I'm extremely myopic) and found that taking 500-600 mcg of chromium picolinate plus 250 mcg of biotin daily (or less than daily at lower doses of prednisone) really helped to regulate my blood sugar. Vision problem cleared up, and also did not experience the extreme hunger related to irregular blood sugar. Try not to eat too much sugar, but otherwise have kept my regular, relatively healthy diet throughout. Allow myself 1 or 2 alcoholic drinks, 1 almost daily.) I think it's important to keep active, or it will make it even harder to "recover" from the effects of PMR due to muscle wasting and loss of fitness. After one year of mainly just hip & shoulder involvement, suddenly started having pain & swelling in my hands & wrists, but oddly, it would attack one site (say, right thumb), clear up within 24 hours, then suddenly attack the other wrist, which would feel so sore it was as if it had been broken, plus swell and turn red, which would be fine the next day, and start up in another finger, etc. So I had to increase my prednisone back up to 15 mg per day and start reducing all over again.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Diagnosed at age 40 in July 2005, after being unable to bend legs to wash feet in shower and could only put underwear on in the morning with difficulty. I was struggling to get out of bed, feeling like an OAP and finding it very difficult and painful to get into the car first thing in the morning. I was and still am quite active and walk about 3 miles a day. I blamed my problems on the bed, but a nice new and expensive bed did nothing to ease the problems. The pain and stiffness in my legs eventually made me go to the GP. I was started on 20mg prednisolone and felt mostly but not entirely better. 20mg pred made me feel weepy. Once down to 10mg it was very difficult to reduce the dose without experiencing symptoms. I finally stopped prednisolone just before I reached 43 in December 2007 which was 6 months ago. Managed to get rid of some of the extra weight and felt very well for 3-4 months. Unfortunately, now (June 2008) having a relapse, with pain and stiffness now in both arms, back and both legs, whereas before it was just the legs and back. In the arms, it almost feels heavy and like pins and needles some of the time. I have not been back to the Dr for blood tests, what can he do but give steroids again? I am feeling very disappointed but not inclined to go back on the steroids for now. PMR has not "burnt out" in 2 years for me. My son caught Mumps at the point at which I think I already had symptoms of PMR, this was in May-June 2005, 1 month before I was diagnosed with PMR. I have never had Mumps, and didn't catch it then from him either. He was extremely ill but did recover.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have recently had to raise the pred level....after my last drop I was extremely fatigued and achey. Once I was diagnosed and took the pred I had a LOT of energy and have been able to continue with an active life. very few, but some, side effects. Worst part was having no one who understands, once the pred started working everyone thought I was better, far from it.This past month I have learned I have to be patient. Like to off the pred. but quality of life is very important.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I didn't present the usual way. I didn't have muscle pain anywhere. I started with swelling in my knees, ankles, wrists, and fingers. I also presented with pitting edema especially in lower legs and feet. I am only 43 years old (and white female). I could hardly move when I first went to my rheumatologist, but it was due to inflammation in my joints, not muscles. After 4 months of no pain and down to 10 mg of prednisone daily, I now have a little muscle tenderness in my upper legs. From the beginning I tend to retain fluid during the day. My legs are swollen expecially right above the knee. That swelling goes down over night but increases the next day. I continue to walk 2 - 3 miles most days with my dog. I think sometimes some of us present atypically. Is there any correlation between being young for this and presenting differently? How often are people younger than 50 years old with this? Keep up the good work with this survey. I appreciate you doing this.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	My main experience is not to overdo it on a good day because you will suffer more on the following day!
Gender = Male Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	i stop taking prednisone because of the bone loss, after 2 years,for the last year taking 4 to 6 advils, 400mg each, other wise i can take the pain ,should find a easier job, hard to change after 33 years. dose seem to be geting better , or im just getting use to it.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	As I mentioned above, almost nobody is interested in hearing about pmr as it is not known. I also think that we learn much more through pmr message boards than from our doctors. During the last year (of 3) with pmr, I have tapered on my own and I have found out that for me, this regime is best: From 20 mg to 10 mg taper 2.5 mg per 3-4 weeks. From 10 to 5 mg taper 1 mg at a time. From 5 to 0 taper 0.5 mg every month but be prepared that it can take longer. I have also found out that at least when reaching 5 mg, I taper one day with the new dose, then 2 days with the old dose. After a week I take the new dose every two days. When coming down to appr. 2 mg I thin it is better to add three days with the new dose and one day with the old and finally go over completetly. Several persons have followed my advice on this board and found it work better than before. I stayed on 5 mg almost a whole year until I tried this regime. I had fatigue when I tapered and went back up to 5 mg several times.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	As I have said above, I have not persevered with steroids over the years but have reached the stage where I shall continue with them for a better quality of life. I was VERY painful (could not turn in bed etc) when ESR was 44. Doctors do not seem to know a lot about PMR. Plenty of info on fibromyalgia but not on PMR Delighted to have the opportunity to complete this survey and will assist in any way I can.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I felt i was doing o.k. until I got down to 5 mil.I am anxious to get off pred so I asked my doctor if I could drop down to 4 and take tylenol if necessary to get me through he said to try it but I'm in a lot more pain now shoulders and neck i went back to five. I went back up to 5 until i see him next week.On my last visit he was going to talk to the rheumatologist.I'm disappointed I couldn't keep my dosage down and fear I may have to go back up again thanks for taking the time and energy to look into this any information we get is more than my doctor is telling me!.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	No one warned me about the serious side effects of Prednisone, specifically the depression and panic attacks. Neither has the fatigue factor been explained. The doctor said "we doctors just can do much when patients complain of fatigue." Not helpful.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	First signs - swelling of hands and feet plus malaise probably due to anemia.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Thank you for doing this, it is a long time coming! Hopefully the medical profession will catch up!
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Physicians just do not understand the drain of 24 hour a day moderate pain. When I was in severe pain they could not help but see it, but now that the pain is hidden they are pretty insensitive ( or do not believe me?). I look fine - never took care of myself so well in my whole life. Also - I look young for 67 and these docs dk how great I really was at 63-64. I am still very thin and very flexible - even my neck - which first rehumatololgist realized finally was "bad" given how flexible the rest of me us. Also - when docs see degenerative disc disease, they tend to blame everthing on it. Well - I have no nerve impingements and my pain was very symmetrical. It can't all be osteoarthritis. If the disease/pain causes depressiion, the stress of trying to get medical help just compounds it.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	Try always to have some project to do, try to help yourself in any way possible I have awful side effects from painkillers like severe constipation and as my anus is always slightly numb with this complaint I find when I strain I bleed quite a lot so the consequence out weighs the relief
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I think doctors do not take Pmr seriously, most people I have spoken to are left by their doctors/consultants to manage their own steriods as I was. Once you are diagnosed and given steriods you are left to fend for yourself. Very few people have had doctors who know how to manage this problem and see steriods as being the answer to everything where in fact I think steriods eventually take on similar simptoms as PMR and then you do not know wether your symptoms of PMR are getting worse or if it is the steriods causing this. I have found that now I am on a monitored reduction programme, my PMR has been getting better and it has been the steriods that have been causing the problem. The illness is bad enough, but why do we have to suffer the weight gain and horrible side effects from the steriods to exaserbate the problem. Why can't someone find a different drug that will help without the weight gain. Carrying the excessive weight doesn't help the PMR. I think this is an excellent questionairre, Hope many people use it across the world.
Gender = Male Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Having been a fit person - I have run 5 marathons, loved football, swimming, squash - this has been so debilitating and my motivation has really dropped. I do have phases when I dig in and excercise but it dont come natural anymore. Whilst my wife and family were sympatheticv and supportive at first I dont think they appreciate what this illness is really like and consequently I do feel isolated. At times of course I feel fine but others I do 'dip' in terms of fatigue. Good luck with this and I hope your reseacrh helps to one day find the answer to the underlying causes to this desease.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	It is a shock to find you have something that effects your life. I did not forsee losing my job and struggling to do things . However, I think positve tholught is a big help and the forum for messages is brilliant its good to share the experiences.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	It is absolutely essential to tell your doctor the extent of your pain and the debilitating effects this has had. As someone who has always been in good health, I did not understand the need to do this, and still have difficulty in 'moaning' about my aches and pains. The result is that my doctor appeared to be more concerned about the impact of the steroids than in relieving my pain and consistently reduced the dose until I admitted to him that I couldn't cope with the pains I was getting and was becoming concerned about the level of Ibuprofen that I needed to take. There is also a need to recognise that even in the days when you are 'relatively' pain free, you cannot go charging around doing the things you would normally do at the pace you would normally do them, because you will suffer the consequences. Frustrating as it may be, the only way to cope with this is to slow down and accept that everything will take you three times as long as normal.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Contrary to all the articles and leaflets, the illness has got far worse as the years go by especially the fatigue and the weakness of both body and mind. Cannot have a bath for fear of not being able to get out and also cannot sit on the floor. Legs too weak to push up (I do have a shower!). I wake up planning my day but plans don't happen. I have to pace myself on the rare good-feeling days otherwise I am so tired the next day I can do nothing. It doesn't take much to wash me out - such as having visitors.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Walking is good exercise and not too strenuous. Sometimes I felt the exercise that the physical therapist had me do made me hurt worse. I went to the PT before I was diagnosed with PMR. So they didn't know I had it. I'm not sure they had ever heard of it before. The chiropractor could see that I wasn't getting better after two months. Sugar seemed to make me tired.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	HAVING A DIFFICULT TIME GOING UNDER 10 MG PREDNISONE AT 6 MONTHS POST DIAGNOSIS. LOTS OF MORNING PAIN. WILL BE ADDING METOTREXATE TO THE REGIME THIS WEEK
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have been able to decrease prednisone without a relapse by going EXTREMELY slowly!
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Just thank you for helping us sufferers. I couldnt work out exactly how you wanted me to answer the tapering box. But I started on 20mg and within a week went down to 15 and then every two weeks I dropped 5 until I got to 10mg and then tapered off 1mg each month. Went into remission for three weeks and wasnt taking any Pred but it flared up again for no apparent reason. I sometimes think food plays a big part in how bad I feel. I am 58 years old and live in New Zealand. My parents were British. I am now on 2mg daily and still have pain and stiffness but its tolerable.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I was doing great after 4-5 months until I dropped below 10mg per day, at which time I had the worst affects ever. Even though I've since gone up to 40 mg and slowly down to 20 mg, I've been in really bad shape for 2 weeks.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	WhenI first contracted PMR then given the miracle of steroids I had unbounded energy and enthusiasm. for about 4 months. I have never regained this euphoria!!!!!
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	You have to have a strong will or PMR can take over.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	My PMR lasted 1.5 years. I was fine for about 2-3 years.Than it came back in milder form but with hands also stiff and painfull. I went on plaquenil. Within 2 weeks my hands were fine (a miracle) and my milder firm of PMR also gone. I went off the plaq to see if it would come back and it did not. I have been fine for 1 year now and take no medication..
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have GCA only - have never had PMR. The GCA is controllable - but the side effects of the Prednisolone are the major problem and its learning to live with the side effects that are the major problem. PMR and GCA patients forget that steroids are their friends - without them they would be in constant pain. I am aware of Methotextrate, but that is the chometherapy route and as it is still relatively new and its known side effects seem to be a little bit worse - at least prednisolone has been around since 1949. What worries me is that people take anti inflammatories - and although GP's do advise against them - not all do - no consistency. If you check with your Chemist, they tell you - anti-inflammatory drugs are not always compatible with prednislone. I have found that whilst the GPs and Rheumatologists do their level best - it is up to the patient to ensure that they are aware that you know there is no cause or cure and that probably end up knowing more than them. I am lucky, my GP's and Consultants listen and we decide collectively which road we go down next. They have given me an emergency standby dosage of 3x60mg of prednisolone to carry at all times. If the symptoms occur I am to take 40 mg - if they do not subside I must take 60mg the next day and get to the GP and or A&E as soon as possible. Elliot this is mrs uk - scrap the first one I filled in GCA only is the clue.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I don't understand why there is little or no research done regarding PMR. It can be very debilitating and affect one's quality of life greatly. In many cases PMR does not end but continues, apparently becoming a life long condition. I see it as a no win situation. One in which the only treatment (Prednisone) causes its share of debilitating conditions also.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	The side effects of prednisone were too extreme so I chose to taper off. I was taking Vicodin/Norco to get a good night sleep every other night anyway. Now I take it every night to sleep.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I was so pleased to have a name for what I have, even though I / no one else I knew, had ever heard of PMR. I have found it easier to say ' I have a blood disorder that effects my immune system' than 'I have Polymyalgia Rheumatica' and then try and explain!
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	This is a most discouraging and frustrating disease. I cannot predict how I will feel from day to day. Non-medical persons do not understand it but many think they can advise on how to treat it! Sometimes I think that I will be weaned off the Prednisone but that the disease will not go away for years and years. The only person I know who has it is a man in his nineties who has had it for years and cannot got off Prednisone without his symptoms flaring.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	It seems that each time I reduce my prednisone by 2mg per day, that my symtoms worsen for about a week before I get back to feeling better. Once in a while I have to kick it up 1 mg for a day or two then back to the scheduled amount.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Be sure you have a good doctor who knows how to administer the prednisone. Because of bad doctoring I almost died from a bleeding ulcer which the doctor did not catch because he was so locked in on getting me back on statin drugs which caused the problems with this disease in the first place. I had lost half of my blood supply by the time I went to Mayo. I am now down to 4.5 mg's per day which I take in the AM. I did have a flare up when I dropped down to 4.5 but managed to make it thru without going back up but it was a bad week. I take no tylenol, aspirin, etc. because I have been bleeding internally and the Mayo Clinic could not find out where it was coming from. I think the next time I drop down it will be less than a .5mg drop. I do feel the best I have felt in ages and have not had to use, cane, crutches, or walker. I am hoping for the best.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Get lots of sleep when tired, exercise moderately when not. Panadol important. I had previous toxic liver syndrome, and think elimination diet of asparagus, licorice, apple juice, and foods high in vitamin C help. After a 'flu-like cold, involving delerium and muscle relaxation at night, symptoms much improved (leucocytes diverted from joint lining destruction?) . Am on 20mg Lipex daily, considering slight reduction in order to activate CoQ10 enzyme.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Find a Doctor who has had experience with the symptoms of PMR. I was fortunate to have a Doctor who's wife has recovered from this complaint.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Try to avoid flu or cold like viruses - both initial PMR and relapse have been after flu like illness.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	While reducing the dosage of prednisone, I experienced morning depression when I reached the 5 mg dosage. I have never suffered with depression before and it was a terrible side affect. I reduced by 1/2 mg to 4.5 and am at that dosage currently. Still have depression in the morning but walking every morning helps. Reducing any more than by 1/2 increases the pain and stiffness. I have to cut my 1 mg pills in half. Retiring early from my teaching profession was a blow to my income. PMR did not allow me the flexability to work with children. The pain was too intense, even at the beginning of my prednisone regiment. I had relief, but I had to take the dosage at exactly the same time each day or I couldn't move without extreme stiffness and pain. At first the fatigue kept me from enjoying activities. I had to lay down and rest or the pain increased. Now I can tell when I need to rest before the pain increases. I don't sleep well at night, but a warm 'hot sock' filled with brown rice and microwaved helps my muscles feel relaxed enough to sleep.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I am at a standstill. I started out on 80 mg of prednisone a day and held that amount for several months. I have been able to to get myself down to 5 mg a day, if I get any lower. My fingers break open again.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have learned that I have to pace my activities which I found very difficult but it is the only way to achieve anything. Very frustrating! I was referred to a physiotherapist and the exercises I now do daily have helped reduce the pains in my legs and thighs.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Don,t worry about the wieght you gain. Just eat sensibly and get plenty of rest. I found swimming was helful
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I was very pleased that my general physician was able to diagnose this from symptoms and a blood test. So pleased that he was knowledgable about this disease, as I do not feel enough physicians are. Also, so many people confuse PMR with fibromyalgia, which I believe are two different diseases with too similar sounding names.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Hope this is a help?
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	NHS guidlines says PR can be handled by GP but most are woefully unable/unprepared/unwilling to make an accurate diagnosis and provide "full disclosure" on what to expect in terms of treatment, side effects, monitoring, etc.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	While I am diagnosed with polymalgia, my doctor, who appears to be obsessed with getting me off steroids, has prescribed Plaquinil and methatraxate which is, I believe, generally assocoiated with RA. Plaquinil cauased my vision to blur and methatraxate caused stomach cramps and frequent evacuation for about a month after two doses. Neither affected the disease. He is currenrtly trying to persuade me to try TNFs (humira etc)
Gender = Female Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = No	Once you get down to 5 mg of Prednisone, reduce the amount VERY SLOWLY!!!
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	KEEP GOING ALTHOUGH IT MUST BE HELL IN AN ELDERLY PERSON
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	It's hard for me to say. I lucked out and am in the care of a wonderful doctor who diagnoised this disease correctly and judged my medication and progress correctly. I would tell anyone starting down the PMR road to "keep the faith" I never lost it. You have to give in - and give up - keep the thought that this is going to take up 2 years of your life. If you get on the right dose of prednisone (as far as I know it's the only drug that works for this disease) and follow a slow reduction procedure, but not freak out at a flare, just "roll with it" and accept the fact that you will have to endure a few "flares" on yur way down - you'll come out of it in good shape. I have also accepted the fact that this disease never realy leaves...It goes into "remission". BUT it is a lot better a disease to have than some others.... and as much as prednisone causes some side effects, there are a lot worse from other meds! Be patient. Roll with it, it will eventually go into remission. The lower the dose of prednisone, the better and better you'll begin to feel. Try to be active and exercise. It makes a major difference, when you are ready. If at all possible get into Physical Theropy in a pool! So much better than "above ground"!
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have been reducing my dosage, 1 mg every 10 days. When this first hit hard, I couldn't get out of bed, walk or dress myself. It is very scary. I have tried to maintain a positive attitute and keep stress at a minimum.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Hard for GP to diadnose PMR/GCA many other things going on. Cough, Sore throat, Posibility of stress after loss of wife to cancer and dealing with alcahol dependent realative. Such pain with PMR and GCA that at times felt like ending it all
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	one of the hard parts is dealing with the lack of understanding that there is with this disease. my rheumatologist was kind but thought that with the prednisone it was "not a big deal" my general practicioner dr, said, i should excersize more and more so that i will get better faster i do excersize but this is harder and painful especially as you decrease the prednisone. it is a very scarey disease because so little is known and the fact that it is autoimmune is quite scarey as well. I think that people need to know that it is an on going disease and people need to learn how to live with it. it can be very scarey because the medical community doesnt seem to understand it, but there are times you can be really limited. would be great to have something telling people how to live with it..and also how to live with prednisone.. i hate being on it..because the weight and bloatedness is really quite frustrating, yet i need this to get through the day. wish there were more how to get through this books, or pamphlets. my dr (rhuematologist) feels that because she sees such hard things, that this is not a "big deal" but at age 53 it seems like a big deal to me.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Slowly, slowly is the only way to condition your body regarding the amount of prednisone that you require. I know of several people who are on a "maintenance" dose for many years and are healthy and leading active lives.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	My maternal grandmother was diagnosed with Scleraderma...another autoimmune disease.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I can only say listen to your body,dont try and force it to do what it doesnt want to do,it just wont work.. Do what you can and praise yourself when you have a good day and actually get something done.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Follow rheumatologist orders. Question . Search for alternate medical drs to look for answers. Try to control pain as pain and social restriction lead to increased depression. yoga water exercise walking when possible message boards for venting of feelings Change of diet to decrease inflammation, resulted in dramatic improvement in health within 3 days. my doctor follows ideas of Dr. Barry Sears. This has been a god-send to me despite the metal poisoning, and has lead to great health benefit .
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Hindsight is impossible and would be wonderful !! So many people have NEVER heard of PMR [I think incl some DRS!!] and therefore it is very difficult when symptoms occur as to know what to think,then depression sets in as you get worse. You think it has gone, but THEN it reappears, have higher pred BUT reduction is not easy-----------DR thinks 6mg right dose, but I've reduced to 5 ,would like to give it up!!!!!!!!!!!! We MUST tell the world about and describe what occurs. I think that sufferers should be very wary of prolonged taking of high doses of pred (not always explained by medics, or encouraged reduction) but after getting down to 5/6 mg try BUT do NOT assume that this may be automatically lowered, I seem not to be able to get below 5/6 mg before symptoms return and Dr says I should stick with it. He is of the opinion that many rheumatologists are not very good with PMR. Think also that there should be a website with a "discussion line/room " so that sufferers and their family/friends can also join in and be made aware of all the problems------------there was a SUPER lady called BERYL in Northants who had a telephone helpline and issued leaflets and had meetings with medics, which is what is now being tried again BUT I feel that more phone/email contacts should be established for all, the only person that I had when I was 1st diagnosed was a chap in USA, there was NOTHING else that I could easily find , and when you are very bad initially you haven't the energy /drive to pursue things.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Once initial pain was relieved with tramadol and steroids had commenced the main problem was extreme fatigue ++ and fatigue still remains after 18 months if I undertake any different activity from routine daily activities eg return to work for 2 x am results in 2 - 3 hours afternoon sleep before I can commence evening meal etc., if I go to gym then I have to pace activities after to cope with fatigue. Pacing of activities and acceptance of limitations ( with no obvious reason) have been most difficult to cope with.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Methotrixate is effective and has less side effects I deall with pain every day but it is manageable.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Do as much research as you can on the subject. Rheumatologists are not always as up-to-date as they should be
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I find that pain is at its worst just after noon and that a lie down on my back completely relaxed for one or two hours helps tremendously. Symptons usually subside considerably by evening. At the present time still on pretty large dose of prednisolone for GCA so all symptons well in check.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Just keep as positive as possible. Maintain regular exercise, walking is great, and I find massaging myself after a shower/bath every morning helps loosen me up. I also do pilates type exercises on the bed before I get dressed and after I have showered. These execises involve gently stretching my arms and legs, along with breathing exercises at the same time. Use the good days to their fullest and then remember that you will have to compensate for the good days and rest up for so long as it takes to recharge your batteries again. I am a firm believer in a balance of exercise and rest.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	It took so long for a diagnosis because I was "too young" to have this. I lost 1.5 years of work due to PMR. I work full-time now, but look forward to retirement in less than 2 years. I hope that when I retire, I will have a chance to relax. My PMR is definitely stress-mediated. I was nearly denied a year of pension benefits because of PMR.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I have had PMR symptoms for 4 months but was definitively diagnosed only within the last month and was totally opposed to taking prednisone beyond a "diagnostic trial" because of side effects. However, I was convinced to take it to reduce the amount of inflammation in my body--although there is no hard scientific information on whether leaving the inflammation untreated makes it more likely that PMR will lead to GCA (I am a science researcher and have read the medical literature), my doctor encouraged to take the prednisone since it isn't known for sure. I have been looking for alternative ways to deal with the pain and sleep interruption. An early-morning, 5-days/week water aerobics class has provided some relief from morning stiffness and pain; walking on a gym track (not hard impact surface) helps with pain on weekend days. Also, having an MP3 player or other audio player with headphones next to my bed allows me to listen to audiobooks or music during the nights when I am awakened by pain without disturbing my husband or having to get out of bed--and sometimes it lulls me back to sleep.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Taking time for yourself by resting and getting proper sleep is paramount in helping live with this illness. I have NEVER felt guilty for napping, not going places ,going to bed early, having a messy house or a sink with dirty dishes, or laundry piled up on the floor. My husband and 2 boys also have had to live with the change in me and they have coped quite well. They have learned to do more things for themselves and have been happy some nights no dinner being made so they could all make their own. I look forward to the day when this is all behind me, and daily vitamins are the only suppliments that I take in the morning!
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Once the steroids kicked in, ie at 48 hours, I felt a 'new' woman. I haven't had any of the fatigue but maybe because I am currently hypermanic because of antidepressants I take, I wouldn't have noticed perhaps??? Although dr not fully convinced of PMR, I am quite certain that's what it was but can't explain how / why it has settled having stopped the steroids. ? maybe the slightly prolonged higher doseage coupled with the extra hydrocortisone was similar to having 'short, sharp' dose that I have heard of. Happy that the pain hasn't returned since coming off the steroids so quickly - was dreading the return. Alternatively, maybe it wasn't PMR at all but, whatever it was, the steroids seem to have done the trick.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have a positive attitude to this illness. I rest when I have to but generally I carry on with my usual activities such as gardening, cooking , shopping although I have found these activities more difficult for awhile after reducing the prednisolone each month, The symptoms are tiredness, difficulty getting off to sleep after waking in the night, stiffness in the thighs after being on my feet for more than an hour. The diabetes is getting better gradually as I reduce the Pred. Originally I was on Glicazide and Metforming tablets and monitoring my blood sugar 3 times a day. Now I am on 15mgof Pred, I take no diabetes tablets but control my blood sugar with diet and test my blood sugar regularly. I found the forum on the Canadian internet site Arthritis Society very useful for comparing my symptoms with others. Also the information about the reduction of steroids and the effect of reduction with different people. I find that doing things rather than sitting is more beneficial in relieving stiffness and pain. Eating lots of fruit and vegetables, oat biscuits, Cornish clotted cream(in small amounts to lubricate my bowels!) 85% dark chocolate (small amount daily) bananas as a snack, and drinking hot water. I eat no cakes or sugary foods. I am now reducing Pred by taking 12.5mg one day then 10mg the next and alternating like this for about a week before going down to 10mg until I see my rheumatologist in 2 months time. I have got this method of reduction off the Canadian forum and it works well for many people when reducing the smaller doses of pred. to prevent recurrance of stiffness.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	My Rheumy thinks I had PMR for some time but was hard to tell because of my accident in 97. When I called my Neuro Dr with how tired I was and could not move my arms toget out of bed, she know right away what the problem was and sent me to see my Rheumy. Both are watching for GCA and check me every couple of months because of my headaches. I have had a couple of MRI's of my brain.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Whateved the final diagnosis It is life changing in every way, From being a very healthy active woman suddenly within 24 hours this changed. I do have severe flare ups, quite often. But in spite of all this try to stay positive and excercise whenever I am able. I find I get exhausted and depressed, severe black moods. My relationship with my adult family had altered, in as much as I dont think they really grasp the change in me. I notice how I try to keep how I feel from them, which in turn results in my avoiding their company-- I also think they avoid being with me. I feel very isolated, not like me at all.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Going from 20 to 15 to 10 mg was too quick a change. Once I had the 2.5 mg (which I asked for) I could get down to 10 more slowly. I am now changing my dose myself as I feel able, but taking it 0.5 mg at a time.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	If you experience extreme morning stiffness, do not attribute it to old age, but visit your G.P. and ask him to consider PMR.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Hip replacment due to wear and tear. 14 months afer pmr diagnosis
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	illness worse during night and early morning by lunch time about 80% well
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I have now been in remission from PMR for 18 months - it lasted 6 years and 6 months
Gender = Female Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = No	For 7-8 years I had suffered with bad knees, needing elastic stockings when out walking. But lately they seem to be completely better and except for stiffness in my ankles I am walking very well. My neurologist is very surprised and so am I! I am now 83 years old
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have relapses for about 3 days every month I have asthma and churg Strauss syndrome When I have a particular painful bout of PMR I take 30mg amytripyline and 1 tablet of oxycontin M/R 10mg then I go to bed for the day. The rest is good and pain is less.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Like me a lot of people are told to take all the steroid in the morning. Whatever the reasons for this it is more important as far as I am concerned to be pain free and lead as normal a life as possible. I am also worried that so many people go to GPs who seem less than adequate in ability to diagnose or listen. It seems fixed in the mind that this is a rare condition of old ladies and younger people just don't suffer from it. Consquently a lot of unnecessary suffering is experienced. I realise I have been supremely lucky in my GP, my Rheumatologist and my husband (who treated quite a few patients with the two conditions over his 35 years as a GP).
Gender = Male Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	when suffering a flareup am very vulnerable to injury (can sprain foot just from walking, can pull groin from walking, can sprain hand,wrist ,thumb just from moving them)
Gender = Unanswered Age When Symptoms Started = Unanswered Diagnosed with Giant Cell/Temporal Arteritis = No	I did not tolerate oral prednisolone well. Feel very unwell and nauseous. Rheumatologist suggested an injection of sterods, which would last probably three months. No help from him in deciding. Did have injection, big mistake, as my blood pressure increased alarmingly. A very worrying time for me, and was put back on oral prednisolone eventually.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	No two days are the same. Sometimes the pain is in the neck/shoulders, sometimes in the hip/pelvis, sometimes almost everywhere above the waist! Most recently have experienced swelling in ankles and feet ( since reducing the prednisolone to 7.5mg). This is not painful but unsightly!
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Being on Prednisone certainly decreased the pain and stiffness (but at what cost?). My goal was to get off all medications period. I strongly recommend a regiment of nutrition, diet (alkaline diet), and exercise to fight arthritis immune disorders.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	continuous discomfort, my familyand friends not understanding how i feel, because i was so active before being diagnosed as having pmr
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Join a support group if possible as it made me realsize how many other people suffered from this strange ailment I had never heard of before I contracted it. i did not feel so alone
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have experienced extremely thorough examinations and tests (including scannings, x-rays, scintigraphi,etc. etc.) of all parts of my body and intensive care while in hospital for 6 weeks, - and 3 months later for 14 days. I continue controls at Rheumathological Outpatients Clinic. My GP has also been of great help i acute situations.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	WHEN I GOT PMR AT MY WORK I THEN TALKED TO PEOPLE RE THIS DIAGNOSIS, OH, THEY SAID, MY SISTER AND MOTHER HAVE THAT. MY GRANDMOTHER HAS THAT. i'M SURE THERE IS A GENETIC CONNECTION. I STILL HAVE PMR, BUT NOT SO SEVERE. STIFFNESS IN THE MORNING. TIREDNESS END OF DAY. STIFFEN UP WHEN RESTING AND SITTING DOWN. PIAN - AT NIGHT. TAKE PAINKILLERS BUT OF PREDNISOLONE
Gender = Female Age When Symptoms Started = Unanswered Diagnosed with Giant Cell/Temporal Arteritis = Yes	KEEP GOING BE BRAVE AND HANG IN THERE PRAY WHEN THE GOING GETS TOUGH
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	MY LIFE HAS BEEN SEVERELY CURTAILED. I CANNOT VISIT MY CHILDREN AS MUCH AS I DID - I NEED HELP AND SUPPORT. I CANNOT WALK MORE THAN A LITTLE. I CANNOT DRIVE MORE THAN 50 MILES AT MOST. MY PROBLEMS ARE GCA AND DIABETES, SOME HEART FAILURE AND THYROI D WHICH IS TREATED SATISFACTORILY
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Before I got PMR, I baby-sat for my five year old granddaughter for a week, she was very, very ill with flu symptoms. She couldn't go to day care due to her illness. She ran a very high temperature and I was up with her off and on all night for many nights, she had a horrible cough and head congestion. About a week after she went back home, I developed my symptoms.
Gender = Unanswered Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	After 10 yrs PMr I have reduced gradually from 20mg prednisolone to only 2 mg but ESR and CRP still quite high. Have come off prednislone twice for a very short period (1-2months) but been advised to go back on as ESR and CRP elevated. While off steroids had to take paracetamol regularly. Had tests for dormant TB and Malaria and due to ESR and CRP being high rheumatologist sent me for a CT scan 3 weeks ago. No results to date.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I HAVE HAD A LOT OF PAIN TRYING TO LOWER PREDNISOLONE. I WAS UP AND DOWN 12 - 15 MG UNTIL I WENT ON METHATREXATE INJECTIONS, 1 PER WEEK. THE TABLES HAD NO EFFECT WITH ME WHICH I TOOK FOR A YEAR . BEEN ON METHATREXATE INJECTIONS 7 MONTHS ON 7.5 MG. NOW ON 15MG FOR 6 MONTHS. CRP 36 P.U. 168 STILL GOT PMR AFTER 8 YRS ON 9MG PRED DAILY AT PRESENT.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	RHEUMATOLOGIST VERY KEEN FOR ME TO STOP ON STEROIDS FOR 4YRS PLUS. NEVER GET DOWN BELOW 5MG, THEN HAVE RELAPSE - ON 10MG AGAIN. AT PRESENT THE TIREDNESS IS DREADFUL, WALKING IS BAD. HAVE HAD MANY RELAPSES, LOST COUNT
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	The pain I get generally in my legs is different from that experienced at the beginning and seems to grip the muscles when I have been walking for about 10 minutes. I believe this is caused by the steroids. I am now suffering an increasing incidence of sight disturbance (jagged image which appears in the centre of vision and works gradually away to the edges of sight and disappears after about 20 minutes). I don't know whether this is caused by PMR/CGA or not and will request investigations.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	i started with 20 mg of pred about 1.75yrs after tapering down the biggest problems occur below 5 mg. when dropping to 4.5 and below the pain slowly comes back and sometimes it is necessary to go back up and then go down gradually. presently am down to 4.5mg.will try this for a few weeks and then go to 4mg. the last few attempts experienced neck pain
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	UNFORTUNATELY IT IS SO EASY TO PUT DOWN YOUR AILMENTS OF PMR TO GETTING OLD. ONCE ON MY FEET AFTER THE INITIAL SORENESS IN MY KNEES I WAS ABLE TO CARRY OUT MY NORMAL DAILY ROUTINE WITHOUT ANY PROBLEMS. EVEN HIGH LEVEL CYCLING DID NOT HAVE ANY EFFECT. COMPLAINED TO GP IN THE 5 YEARS LEADING UP TO BEING DIAGNOSED WITH PMR/GCA OF A DRY COUGH. HAD MANY TESTS BUT NOTHING FOUND. NOW SEEN WEB SITE WHICH STATES THAT A PERSISTENT DRY COUGH IS A POSSIBLE SYMPTON OF THE CONDITION. UNFORTUNATELY WHEN DIAGNOSED GP WAS NOT EXPERIENCED WITH THIS CONDITION. SUGGESTED THAT I SEE A NHS RHEMATOLOGIST WHICH WOULD TAKE 6 WEEKS. THEREFORE HAD TO SEE A SPECIALIST PRIVATELY FOR CONSULTANTION. ALSO GP DID NOT KNOW WHAT LEVEL OF STERIOD I SHOULD BE TAKING. IT IS WELL KNOWN FACT THAT GPS WILL TRY TO GET PATIENTS WEANED OFF PREDNISOLONE AS SOON AS POSSIBLE. UNFORTUNATELY WITH PMR/GCA i DO NOT BELIEVE IT IS AS EASY AS THAT. I AM ALWAYS FEELING ANXIOUS THAT I MIGHT NOT BE GETTING THE BEST ADVICE TO TREAT THIS CONDITION.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	MY EMAIL IS ROBERTSHUNTS@AOL.COM TEL 01480 52713 DIAGNOSED PMR AND GCA 25MONTHS AGO. STARTED ON 30MG DAILY PREDNISOLONE. WITHIN 1 WEEK SUFFERED SEVERE MEMORY LOSS AND COGNITIVE IMPAIRMENT (COULDN'T COMPLETE TIMES CROSSORD, PLAY COMPETITIVE BRIDGE, EASILY COMPLETE TAX RETURNS ETC) THIS SERIOUSLY AFFECTED MY SOCIAL LIFE AND CAUSED ME GREAT CONCERN FOR MY FUTURE. FORTUNEATELY, AFTER SOEM MONTHS, I FOUND DETAILS OF RESEARCH DONE (IN USA) ON THE INTERNET. MY SYMPTOMS ARE NOT UNCOMMON. NOW ON 3.5 MG PRED DAILY (REDUCING) AND MENTAL ABILITY ALMOST NORMAL. AM 75 YRS OLD I.Q WAS 140, AM RETIRED NURSE (SRN) NEITHER MY GP NOR RHEUMATOLOGIST HAD KNOWLEDGE OF THESE SIDE EFFECTS OF PREDNISOLONE
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	In weanbing off the prednisone, I must ask: Is pain that occurs with a decrease in dosage the result of returning PMR symptoms, OR is it addiction to prednisone?
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Looking back the symptoms have been there for a few years. The stiff legs, scalp pain that I put down to static electricity. Getting emotional when I had the reputation for being a cold bastard! Walking up hill and the pains in my thigh muscles. But these cleared after getting muscles warmed up. This month assumed my pains were due to jaring my body stepping off a kerb. However I deteriated over a few weeks and saw the dr a week ago.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I HAD SOME EMOTIONAL STRESS IN THE MONTH BEFORE I BECAME AFFECTED. THIS CAUSED GENUINE GRIEF AND SHOCK, BUT IT WAS RECONCILED, AND RELATED TO MY SON AND HIS WIFE (NOT MY OWN MARRIAGE) iI KNEW IT HAD AFFECTED ME DEEPLY. IN NORWAY I HAD WORKED A GREAT DEAL WITH THE NEW GRANDCHILD. OTHER CHILDREN, WALKING OUT WITH BABY, IRONING ETC. I DID BECOME FATIGUED. WAS DIAGNOSED WITH PMR ON MY RETURN
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Since only recently diagnosed no further tests have been carried out
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	It took me three months to find a doctor who know that I had PMR. I also helped a friend to go to the doctors when she told me she felt ill and couldn't do her bra up
Gender = Male Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	At the time I contracted this illness I was training Physically very hard,losing a little weight(had not much to lose 7lbs if I even needed to) not sleeping well at night (on average 2-3 hours sleep) this was very difficult for me as i was constantly tired. Work was stressful and then I took the flu for the first time ever. Two weeks after first contracting the flu I cycled 125 Miles at the week end (Saturday/Sunday)- felt as you would expect after having the flu on this cycle - bloody awful. But I didn't expect anything different. Rested the whole of the following week then that week end I cycled another 125 Miles - felt even worse after this one. At this stage I was a little stiff around my back and neck but thought little off it(incidentally I felt the same after my first cycle). However stiffness got progressively worse fairly quickly down my spine - from my neck down to lower back I was very very stiff. Shoulders,thighs,knees,ribs all joined in. Right side was as sore as my left side. Doctor took X Ray of spine told me I had a slight narrowing of space between vertebrae in lower spine and that there was nothing that could be done and I would just have to live with it. Shocked and horrified at this news and how it was delivered to me I went privately to a physiotherapist. At this stage I ought to point out that my pelvis had tilted for no reason at all and I was in awful pain - the physio corrected the tilt but I put my pelvis out twice after this just doing normal things - all part of PMR I now suspect. This pelvis tilting happened in the first few months of my PMR even before I was diagnosed but has not occurred since. However,back to the X Ray of my spine - my physio asked my doctor for the precise comments made by the hopital about the X Ray - when he found out the comments he told me not to worry as anyone who played sport over the age of 21 would have exactly the same comment made about them and certainly a man of 44 would definitely have some narrowing of the space between his vertebrae. This cheered me up no end. However,back to the Doctors I had to go cos the pain was becoming more and more unbearable in all parts of my body. ESR and CRP were sky high 133 and 45 respectively. Doctor arranged trip to local hospital for me and 7 months after first taking PMR I was reluctantly diagnosed. The doctor at the hospital felt I was too young to have PMR but whilst waiting for some more results he prescribed me a weeks dosage 30mgs per day of prednisolone. The steriods made a miraculous impact within 24 hours and within 48 hours I was like a new man. The hospital doctor then diagnosed PMR. I would have to say the steriods are amazing for taking away the pain but they do it a heavy price. Impatient as always I thought I could come off these steriods quicker than my doctor was suggesting. He was right I was wrong and I set my recovery back at least six months. I'm now down to 4mgs daily taking at least a month before lowering by one milligram. Hoping in six months time I will be off steroids as i'm told the last few milligrams are the most difficult to reduce. I still do get stiffness if I sit or stand for 20/30 minutes or more but i can easily live with this. My muscles tire very easily and i'm fatigued much of the time. My fitness levels are zilch - very depressing for me - weight gain is 3 stone but i'm determined to lose this and regain my fitness but fear that in trying to do so i will be inviting the return or the onset of PMR again. They did test me for Giant cell arteritis an experience I hope never to undergo again but it proved nothing. I just about managed to keep working- my job as an accountant is office based so I'm sitting for long periods. When I've reduce my steroid dosage I get very fatigued for 1-2 weeks my employers are OK if I arrive to work 1-2 hours late. I do make the time up but it at least gives me some flexibility. Concentration is difficult particularly at work and I do not suffer fools as easily as I once did - this can make relationships at work difficult - now to avoid confrontational or stressful situations at work I walk away biting my tongue and return to the problem when I've had time to think about it clearly and without pressure. I have found that I cannot get the same amount of work done that I once did and it takes me longer to get things done. I work some nights and week ends to catch up on my work which i am happy to do cos I do not want to sit at home on my own with this awful disease. I've taken time and perhaps been long winded in detailing my PMR experience but it is in the hope that it may be of value primarily in your research or to other folks who have PMR.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	With my previous bout of PMr and again now I felt a complete release from pain within 72 hours I did realise last time that if I overdid it I experienced a compkete wipiout of energy and intent to lokk after myself better this time
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	GET UP & MOVE! I know this is not what any of us wants to do. My sed rate was 118 when I was diagnosed and continues to hover around 28-30. I am in a great amount of pain in the morning & later into the afternoon. Getting out of bed & sometimes even fighting to get the covers untangled & off of you is a struggle! If I lay around all day the stiffness & pain is horrible and it becomes very easy to feel depressed. I have found Bee Pollen, Royal Jelly, MSM/ SAM E, to improve my mood & attitude. I have had PMR for about 3 years now. It started in my shoulders, stayed in my shoulders & hands for about 18 months. I was symptom free for two months this past summer. Starting in September 08 in came back with a vengence in my left hip,lower back and knees. When symptoms first started several years ago the GP thought it was the West Nile Virus.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I am realizing the exercise I do for employment, yoga, is making very definite improvement to dealing with this disease. I recommend it to all patients.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	To enjoy life to the fullest while you can because tomorrow you could wake up not being able to move and your whole life will change.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Because of the Prednisone, I was not aware that I had torn meniscus in my knees. Dr said that Prednisone prevented the knees from swelling noticeably, but as I tried reducing it, the knees started getting bad. I maintained the Pred until knees were repaired. My concern is that the Prednisone may mask similar injuries, although without it, I would not be able to function!
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I have been on no higher dose than 15mg during my 15months of having PMR. I have learned to gradually slowly decrease my Prednisone dosages. The one setback was because I tried to decrease by 1mg after 5mg instead of doing only 1/2mg then...I am doing the 1/2mg now slowly. I wish that I could just get done with the prednisone after 18 months on it. I also have some osteoarthritis that interferes with some of my pain.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	My mother had hyperthyroidism and a goitre removed when I was 3 months old
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I was under 50 when my symptoms started and this has lasted over 3 years. It has taken 3yrs to get a dx. It has really changed the quality of my life. I was not treated with prednisone for most of this time and the fatigue has been the most hard to control symptom I've had. My rheumatologist suspects I also have fibromyalgia. My SED rates have run between 32 and 80 for the last 3 yrs. I have been on prednisone twice before this time. One time for 10 days(lose dose) and felt fantastic. The 2nd time my GP suspected GCA and started me with 40mg and dereased down over 6wks. I had wt gain, edema, increased BP and in general felt worse. I had a temporal bx which was negative. I have found that taking an herbal formula with anti-inflammatory properties very helpful.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I am on Methotrexate. It seems to be helping. I am being weened off the cortisone.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	More info on us younger ones. I HATE this old-person's body and disease I now have. Work and family problems and information on reaction to steroids is all about the older generation, who possibly already have weight, sight and movement problems which are natural with age. I feel quite isolated.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I ha d several relapses usually when IUhad an infection and then had to increase my steroids and then tail down again. A family bereavement also conincided witha relapse and the longer my pmr went on, the more difficulat it became to tail off the steroid dose. Even though I am down to 2.5mg after 4 years and 10 months. I still need to take diclofenic 1-2 daily to help with pain (worse early am and late at night0 or after extra activity plus when tired my nights are still disturbed when turning.
Gender = Male Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	prior to pmr i was under stress and work as a builder in a very damp building. after i thought it was under control i went back to work for about a year,but sadly i got very weak in the arm and legs and had to give it up
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	DIET LOW IN SUGAR DOES HELP I THINK THE DAM WEATHER MAKE THINS WORSE STRESS PLAYS AN IMPORTANT ROLE
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	On my last visit to the neurologist at the hospital a few weeks ago it was explained to me for the first time that when I was admited to hospital with an ESR of 140, I was not expected to survive the first night, but the high doses of steroids saved me, it was thought that I had a brain tumour that was causing the problems, but it was a lucky chance that a neurologist spotted it. He said to me at the time that he thought that it could be PMR/GCA which of course I had never heard of, and if it was a high dose of steroids would make a difference within 24 hours, in fact within two hours I noticed a difference. The neurologist described it as the most spectacular recovery he had ever seen. But after 5 years it still lingers on, and I can no longer do what I would like to be able to do. But having said that I have found other things to do and am fortunate that I can still lead an intresting life. John B Ladlow December 2008
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	n/a
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	For me the major disabilties were extreme pain and almost total lack of movement. After taking prednisolone the pain is under control (7mg) but my my mobility is almost back to 100%. I now intend to embark on an exercise regime to monitor the outcome.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	At this early stage in my diagnosis I the only thing I can say is that the system in France may have given me an earlier diagnosis than others I have read about on the patient UK website. Here, one can ask for annual blood tests with a health MOT and the patient will be referred to any specialist dependent on the results. There is a waiting list now in the Haute Savoie for rheumatologists and it took me 4 months to see one. She followed the recommended procedures as set out in Dr Gasgupta's research paper and gave my diagnosis within a month of my first appointment.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I am still trying to conquer this 'disease' after approx. 8 years. I ws advised by my consultant to try and work through it as it should burn it self out within 2/3 years. This did not happen and it has been very hard to cope with. I did manage to work full time in a clerical job. I wanted to come off steriods and about 3 years ago I got to the point where I was able to stop taking them. However within a short space of time my ESR shot straight up and I was back on the merrygo round again. This was very soul destroying and the fact that you cannot do what you feel you want to do, that steroids put on weight which is virtually impossible to remove and life seems one big haul. When I asked about how I could lose weight was more or less told that it was nigh impossible. I have now got down to 3mg and 2 mg alternate days and then decreasing in an effort to get off steroids once and for all. I am keeping fingers crossed that this works this time. I have asked my consultant on numerous occasions about alternatives but haven't met with any positive suggestions. One of the symptoms I have noticed prior to my ESR going up is the feeling of cold water going up and down my back. If I get this feeling I now think oh, oh. here we go again. Also increased pain at the bottom of my left thumb joint. Still have big problems with my neck, shoulder and lower back particulary just under the bottom rib area.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have had to look up all my info on the web. Not confident in doctors at hospital, its like they cant help, they do not seem concerned about how I feel, this has completely changed my life, I have had to give up working. my whole life has changed for the worst. I am physically unable to do anything I used to do and I have to argue, question and fight for any answers from the medical profession.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Do not attempt to cut Prednisolone too quickly, even if told that you MUST be down to 10mg or 5 mg etc. otherwise, like me, you may find the pain and disturbed sleep returns.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have not had the test described above apart from the ESR and just one test for diabeties. ~When I asked the doctor about the fatigue that is mentioned above he has always told me that it's nothing to do with PMR. I am now down to 1mg prednislone and he has told me that after taking the 1mg for 3 weeks I can stop taking them. I told him that I'm suffering from severe pain in the tops of my legs and he says that its nothing to do with PMR!! It seems to me that doctors or at least my doctor doesn't seem to know an awful lot about this. I was in pain for months and it was only when my brother found out about PMR on the internet that the doctor decided to give me a blood test.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I can't take Prednisone but what works for me is a hot bath with epsom salts (only on the days when my legs are strong enough to get me out of the tub!!) Also massage with a product called "biofreeze" really feels good on the sore muscles in the hips, neck and arms. Also, lots and lots of prayer. This disease really rips the rug out from under you and takes away your life as you knew it. Keep your chin up and realise that "this too shall pass." Be open and honest with friends and family about your condition, especially those who rely on you. Accept help from others, even though it is hard. Lower your standards for what a "clean" house is, and in my case I let my young kids clean and do laundry and even if it's not perfect, that's OK. I guess we will all learn new things thanks to PMR!! Thank you so much for taking the time to study this disease. There is not enough knowledge in this world about the true nature of it. Hopefully medical professionals around the world will use the data to help their PMR patients!!
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I have developed macular degeneration. Am now partially sighted.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	My general health has been affected since I started PMR. I got osteoarthirits with the right hip. Total hip replacement on 23 Dec. So I am sure you will understand when I I say I have filled this in the the best of my ability. Elliot I filled this in - Mavis.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	The only information I can give is to be careful on reducing the prednisone. Take it slow. It may take a year to reduce, but that is the best way. I have tried to reduce 3 times and have ended back up to 10 mg. to stop the pain. I don't like the weight gain, but I do like the quality of life that I have without the pain.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I realise that this is early days for me. I will complete this again when I have been on treatment for a while
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I'm unable to answer several of the above questions. When I was diagnosed 8 years ago I had had relatively few dealings with doctors, apart from the usual maternity ones! I did have an early hysterectomy due to fibroids (at age 34) but after that was perfectly fit and well for 20 years. I did not, and have not, asked questions about some of the above information as I wasn't aware it was there to be asked about and even had I done so, I don't suppose I would have understood it. I do believe that I was referred to the Rheumatologist in this area initially as none of the first blood tests showed anything and also as far as I am aware they still don't, in spite of the fact that I obviously have full blown PMR.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	After I stopped Prednisone I contued to have symptoms and my sed rate jumped from 4 to 30
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Last Nov-08 I was told that my PMR was gone and that I should go off of the Pred (and at that time I was down to 1mg) I went down to 0 for about 1 week and I was getting so sick. I told my doctor that I didn't understand how I could be cured of PMR when I felt so terrible. He retook my blood and SED rate was back up and I was also anemic. I was told that PMR & anemia kind of go hand in hand (did not know this ). The one thing I think that needs to be addressed also is anemia. My iron was down to I believe 10.7 and as soon as I increased my Pred it jumped back to 12.3. So, when you think you're ok and you're not feeling so good have your iron checked as well. I would think that this would be part of the testing as well.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I have just recently had physio with a real physio who is hands on. Whilst she is unable to cure the PMR she is helping the unaffected muscles from being affected by the crook ones. She also recommends heat packs and a regular relaxing massag
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	it was very difficult getting an initial diagnosis from my gp . He sent me for all sorts of tests and to different medica;l practitioners i.e.chiropractor because her said I was too young. I even had a CT scan it was evetually a locum at the practice who sent me for an ESR b test (over 80). I attended a rhematoid clinic for 3 years but they said evetually that it was no use me going any more and it looked like I would always have the condition. I went to a variety of different Physio sessions, aqua puncture, treatment with heat and magnets etc. nothing made it any better. I am not in so much pain now but I think I have got used to the symptoms. I think if I had been very sporty I would be feeling worse! soem days are worsr than others ,some more stiff nothing seems to be a common trigger. I was apalled when my mother who also has the condition was taken off her steroids when she was in hospital after a stroke and no one listened to me about why I thought she screamed with pain every time somone tried to turn her. She was eventually put back on steroids 2 months later!!
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	for me it is very early in the diagnoses so difficult to say, i have generalized arthritis as well, so the pains can be difficult to identity, i also have cervical spondylosis.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Very common illness - keep pushing doctors etc.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Yes	The information about these diseases needs to get out there. I haven't met anyone outside the medical profession who has ever heard of them in the two years I have been dealing with them Even professionals aren't up to date...my optometrist said he didn't know much about it and had never dealt with it. He didn't perform a dilated pupil exam to check the optic nerve even after I told him I had been diagnosed with GCA. Thank goodness I saw an opthamologist who caught the raised intra-occular pressure and field-of-vision defects. Even though I am in remission, there is a possibility that I may relapse and have to take prednisone once again...something I really hope to avoid.
Gender = Female Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = No	Wondering if taking statin drugs can trigger PMR? I was on Pravasttin for about three months before I started having the symptoms of PMR
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	my sed rate was never high, c-reactive protein was high but might have been a result of the injury to my knee. I have calcium pyrophosphate crystals in my synovial fluids
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	This condition has been a big "wake-up call" for me, coming as it did after an intensely traumatic period of my life. I had been going around for more than 6 months knowing I could not go on in this way ( my "batteries" felt completely empty) but I didn't know how to stop or change the things I was caught up in. Well now I have too, I've no choice, and the "long hard look" at myself I'm having to take, though not always easy, does bring a sense of liberation too. I wonder about the psychological "stories" of my fellow PMR sufferers, are there maybe some common threads? Would it be worth looking at those things too - after all, if we understand ourseves a bit better, maybe we can be prepared to deal with life's dramas in a better/healthier way in the future?
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Had I known the bilateral nature of the pain and stiffness of PMR I would have sought earlier medical help. As an active 67 y old having taken up golf this year, put the increasing pain and stiffness down to the exertion of muscle groups not used in other sports.It took a routine visit to my chiropractor for her to point out that the pain and stiffness was not a result of sports stress/injury and was not muscular/skeletal related. She suspected PMR and recommended a visit to my GP,where blood tests etc confirmed PMR.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	My symptoms started in February. I am now (September) down to 1 mg of predisone a day. Still in a bit of pain but don't mind too much. My shoulders hurt in the morning and I find it difficult to squat. I have been doing plenty of exercise i.e. walking and cycling. I am following a healthy diet and have lost 3 kg. Also after a long walk after I sit down for a while I find it difficult to get up but once I get going the pain goes! I am convinced I had PMR approx 10 years ago but it went undiagnosed. Consultant at hospital (horrible man) made me feel like I was making it up. So I gave up going and took 500mg tablets (large pink ones) to get throught it. The pain didn't last so long this time and was mostly in my wrists and knees. I was 40.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I find the slower you reduce the preds the better
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I feel generally ill. Pressure and pain in my head make it difficult to be sociable and take part in activities that I had enjoyed. I don't look ill, and nobody understands (or has ever heard of Temporal Arteritis) and so it's a very lonely existence. My husband repeatedly tells me that we need to find a "good" doctor, and for me to get different treatment, so I know that he doesn't understand that all that can be done is being done. I see a rheumatologist, a wholistic MD, and an internist, and I believe that they're "up on their medicine."
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Write it all down and research what you can.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have found it very difficult in coping with this illness as I am still not sure, after suffering for two years, if in fact I have got PMR although all the symptoms I suffer from point to this disease. My doctor has said it will burn itself out in time so only time will tell
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Even though there is little mention of tendons being affected (mostly muscles, right?) I definitely have pain in elbow, knee, hip and shoulder tendons which responds well to prednisone. Fatigue is overwhelming - you must give in to it. Sleep? Next to impossible. Anxiety, mood changes? Likely caused by prednisone or PMR itself.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Physically I feel fine but I do sweat a lot and it was really bad in the summer. I walk a lot and quite long distances but this year I have had to wear a scarf to cover my hair as it gets absolutely soaking wet. Also I have only put on 7lbs but it feels like I've put on more as it is concentrated on my hips amd stomach.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	This doesn't go away quickly for everyone. I have had it for nearly 7 years and there is no sign of it going away.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have been dealing with PMR for over 10 years. My doctor recently told me I was Steroid Dependent. I am trying to cut back for the third time and now at 7 mg. and have spent the last two weeks in very bad pain. I am hoping to cut back more after I feel a bit better. My Rheumatologist said I should stay at 7 mg. for a month before cutting back again and making sure I am feeling better than I have been feeling. I weight gain has been significant, and the moon face is just very unbecoming. I am sad that I cannot be more active. I had a total knee replacement two years ago, and need to have the other knee done soon as the pain is getting worse.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Massage and chiropractic have helped me. My rheumy doc says not to eat salt but my other docs tell me to eat it if I crave it and I do better when I eat the salt. I started at 8 mg of prednisone and I am at 6 mg at 8 months.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I wonder what I could have done differently, and strongly believe when attending a GP surgery, always try and see the same doctor, going from one doctor to another can cause misdiagnoses to occur. If you are having side effects from your meds always raise this with the prescribing doctor and no matter what the package instructions say about continuing with your meds, if you are having very serious side effects, stop taking the tablets and get straight back to your doctor as a matter of urgency. I wish I had done this when I took an antibiotic that caused a severe kidney injury, who knows how differently things might have worked out. If you suffer with what you feel is flu type symptoms and become completely immobilised in the mornings ask for a referral on if the symptoms don't resolve in a reasonable time. Be prepared to keep returning to the doctor, the same doctor each time, so that they get to know you and I hope you have a more positive experience and an earlier diagnosis than I did.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I also had a sciatica, during my 7 and a half weeks ordeaI. There are times I felt like my right back muscles along the bra line was being stretch all the way to the left. I was in terrible pain all over and still driving to my appointments even though I was taking 750 mgs of vicodin and 800 mgs of advil [every 6 hours.]
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	i hate this illness, ihave learned to live with it .i know steroids have bad press but they are a wonderfull compared to the pain ..i am getting better hope it leaves me soon .you do learn to get on with your life and accept it .its not the worst thing to get.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I was only diagnosed a couple of weeks ago, so it is early days for me. Awaiting review with GP this week and possible adjustment to my steroid dosage. I am unable to take any other pain medication due to my Ulcerative Colitis (another auto-immune disorder I have suffered with for 18 months). I seem to get periods during the day where I am relatively pain-free, but they don't seem to last for long. Stress definitely contributes to my symptoms - my mother is currently in hospital following a stroke so naturally that causes additional anxiety and affects my pain. I am hoping that when she is home (she lives with us) then I will be more relaxed and pray I will be able to care for her as I was prior to the PMR diagnosis.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have had PMR for 2 years and have not been able to reduce my dosage of prednisilone which remains static at 15 mg per day and my esr also remains at around the 16-20 mark. The hospital tells me this is normal but the pain is not normal! I am now taking 15mg of methtrexate a week as well as the prednisilone.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	When you relapse, if you have changed doctors you may need to take a lot of tests over again. Get a referral back to your rheumatologist as soon as possible.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Currently challenging the G.P diagnosis only just been refered to a rhuematologist who has disputed the exsistance of PMR in me
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have done a lot of exercise over ten years - circuit class (2 hours twice a week ) the gym 3 times 3 hours and a 6 mile run once a week - I think I may have overdone my training.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Although the sypmtoms of PMR & GCAhave gone with the steroid treatment, other sypmtoms from the steroids have kicked in. Weakness in my legs, dizziness, changes in blood sugar and profuse bouts of sweating combined with dizziness and tremors are proving difficult to cope with. Also the Irritability can be frustrating. I am hoping that as the dose reduces, the sypmptoms will also lessen.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I was 55 when diagnosed after 2 years of trying to find out what was wrong. Initally thought I had lower back problems then it went to my neck and shoulders and chest and groin - I felt like an old women all at once. So was so grateful to be diagnosed with PMR and take the medication that eased my symptoms. It was a relief to know that I had something as I was completely fobbed off by all the professional medical people I saw. All I wanted was my life back - as I was a very fit and active person - going to the gym 3 times a week doing a circuit training class twice a week and a 6 mile run at weekends. I obviously thought it was because I had done too much exercise and I have not been told otherwise. So I do wonder if there is a connection.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	My Rheumy plans on keeping my on 20mg / day of Pred (10mg AM; 10mg PM) for another 3 weeks for 4 weeks total. Then he will run more blood tests to check ESR, CRP1 and CBC again. Then he plans are lowering my dosage some. I expect some withdrawal symptoms for 1 week after a drop in dosage.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Although it is awful having to take high dose of steroid when you suffer from this awful condition, it is best to agree to be sensible and not resist. I was so reluctant to increase my dose this time from 7.5mg, because I had dropped all of the 3 stones in weight I had put on, that I asked to be edged up until the symptoms went. This time it did not work and I am having such a dreadful time trying to get it under control again. PMR symptoms came back at one point although did not hang around past 30mg Prednisolone but CGA still there 9 days after going up from 40mg to 60 mg. Would have been best to allow the large dose from the start. This bout has made me so ill yet no one can see or understand it. Goodness only knows, I am a private, proud person who does not like to moan but there is no-one to moan to anyway. When a friend was told the dose of steroid I was taking she said 'I would refuse to take that'. Illustrated perfectly the lack of understanding around the condition as she is a qualified nurse. Total lack of support really apart from being pushed into Rheumatology clinic space where there are huge queues and lots of noise. I retired from work after it became obvious that it was not going to go easily this time. I could not tolerate the thought of the public struggle to get well as I had on the other occasions because of remarks such as ' someone has an appetite, likes her food, your face is swollen and such like.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Accepted for too long that I had a 'virus' and only when the pain suddenly started in my limbs did I go to the DR.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Stay positive and carry on as normally as is possible - it doesn't matter if you do things more slowly. Also, talk to family and friends about PMR, it is amazing how much help and support they will give when they understand more about your condition. Ask for leaflets from your GP or local hospitals, these can be given to friends to read for themselves at their own leisure. Don't be afraid to ask for help and look forward to the day when you will feel much better.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	The Tremors are very incapacitating. I feel more sleepy early evening. Have to push myself some days to do things. Feel "spaced out"....that is to say not with it. I feel my whole personality has changed and I am no longer who I was. Feel weepy and down some days.............and some days very dizzy. I keep a Journal of visits to the GP and any changes he makes in meds, which is why I can list the dosage of meds so readily.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	*I would like to respond to this further down my current bout of PMR GLA etc
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I believe that my PMR stemmed from stopping diclofenic and PMR was brought on gradually although in everything I have read about PMR it appears suddenly. I asked my GP about referral to rheumatologist but he did not believe it was necessary. Should you wish to contact me: Kay Porter kayp.porter@btinternet.com Tel: 01235 224879
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	My PMR seemed to evolve slowly from about Feb. 2009 until I was finally diagnosed in late Jan. 2010. Most of the websites I've looked at say that it happens quickly, but I think mine was developing over a period of almost a year. My symptoms haven't really matched the textbook symptoms that are usually listed at medical websites. For example, there was no shoulder pain or hip pain. I've primarily experienced it as a feeling of leg heaviness and stiffness, but it may have even started in Feb. 2009 with a case of plantar fasciitis which didn't heal readily, followed by knee problems which I have never had before. I have had plantar fasciitis (foot problem) for 40 years but most of the time it's been in remission....and when I get the orthotics adjusted it used to go away rather quickly. This time it seemed different, like it just didn't want to go away. At first the leg pain and stiffness occurred in the morning, or when I was getting into the car--after halfway sitting down in the driver's seat, I had to physically lift my left leg into the car. After I had been sitting in the car for awhile, I would have trouble getting out of the car and walking. I tried to take walks but my legs felt all weird. As time went on I would get up in the morning and after an hour or so of puttering around in the kitchen, my legs felt so heavy I had to go lie down. I somehow got by on NSAID's. They helped a little, but then by late afternoon I'd experience the same awful feeling of heaviness, blockiness, stiffness in my legs--even lying down didn't really help. I also found out in the months before being diagnosed, that I have a bulging disc in the lumbar back, so I thought for a long time that the pain I was experiencing must be sciatica--but when I went to an esteemed orthopedic spinal surgeon, he didn't seem to think this was the case. (I had been having electrical like pains down my entire back side whenever I wanted to change sleeping positions, and my back would lock up--very frightening--I'm still not sure if this was due to the bulging disc, or part of the PMR). I've also had a very sore upper right arm, transient pain in the collarbone area, and some neck pain. It was so frustrating; I went to podiatrist, orthopedist, back doctor, physical therapy; and for a multitude of blood tests, MRI's, X-rays, ultrasounds, Ct-scans; and still didn't know what the heck was happening to me. Finally, I guess I finally complained consistently enough about the right pains to my primary care doctor and she sent me for blood tests that confirmed it was PMR. I feel as if I went from being about 39 yrs old (I'm actually 62) to feeling like 100 years old in one year. I want to take walks but can't last more than about 20 minutes without resting or giving up--and I was a person who could walk all day. I still ride my stationary bike for at least 30 minutes a day but I'm not sure if it helps--it does seem to warm my muscles up in the morning but ultimately I wonder if it's making my legs more sore. It's just so hard to tell. I hope this information can help someone else!
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have found it very hard to come to terms with this illness. Initially it was a great relief to be diagnosed and the steroids worked very quickly. However I was not prepared for the continued pain and fatigue that I have experienced in trying to reduce the steroid level. Ater eight months I am at 10mg per day (started at 15mg) and I have the pain most days and generally feel exhausted.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Methyltrexate had a bad reaction to it every time, but still tried it for 6 mo. to try and get off steroids and avoid weight gain..If PMR and steroids don/t go away Obeisity will kill me.Cut back on steroids always causes jump in Sed rate and increase in pain
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Wish the physicians would have been a little more keyed in to this diagnosis possiblity. They seem to think that it only happens in elderly (over 70) I saw 2 Spine physiatrists. 2 opthopedic surgeons, 1 neurosurgeon, and intenal medicine md and 2 physical therapists and no one thought to check a ESR and CRP! I suffered for 11 months and endured many medical tests and procedures (epidural injections in spine) that were unnecessary and cost thousands of dollars. Addition of Metrotrexate has been very helpful and helped me get to a much lower dose of the prednisone. Wasn't really walking normally until started MTX. Haved switched to taking 2mg at bedtime and the rest of the dose in the AM and this has helped with morning pain and stiffness.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	My father and brother had and have autoimmune diseases - I grew up and lived in the shadow of Sellafield - a nuclear energy plant
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	i think i will loose my career which is my life doing surgery and delivering babies( OB/GYN) IN SOLO PRACTICE,
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	mY EXPERIENCE IS ENTIRELY WITH GCA.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Prednisone 15mg worked really well for me. 1 and half yrs into PMR now I am at 8mg and continuing to reduce at the rate of 1mg every month. I got it suddenly one day when I woke up and it was bad. I could not get up from the bed, had swelling of feet, palm and fingers, shoulder, hip, wrist and joint pains. I thought I was going to be disabled. But for people with this PMR out there, it does get better, hold on, be patient, don't wait too long to be diagnosed. Get your doctor to prescribe prednisone which is in itself a test for detecting PMR. If PMR responds to low doses of prednisone then that means u have PMR. I was delayed in getting diagnosed and suffered for 6 months. The sed rate does not show up initially and starts showing up later on.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I found that taking Omega 3 has controlled pain and inflammation. Also eating a low carb diet helps tremendously.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Symptom flare 3 days after dropping steroid but levels out again
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Most doctors do not seem to know a lot about disease even though it seems fairly common. I was not warned of dangers of Giant Cell even though I manifest some of sypmtoms early on.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have gained over 30 lbs since I began taking the steroids. I worry about devoping diabetes but I realize that I need the steroids to manage the pain. I have cut out most of the sugar from my diet, also processed foods, white bread and rice. I am eating organic whenever possible. I am afraid to start exercising again, before this happened i was at the gym 3 times a week and also took yoga classes. I have reduced to 10 mg within the last 2 months but am noticing some hip pain so I will wait to reduce any further.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	When reducing from 15 mg to 12 mg.5 mg - I found it worked better if I split the dose 75% 25% then gradually changed to a single morning dose. By taking natural yoghurt at breakfast - before the prednisolone - I rarely need to take Omeprazole for indigestion. I have managed to avoid weight gain from the prednisolone, but I do need to be careful not to eat too much and to get regular excercise.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Be grateful for any feedback. my initial CRP reading was 130.0, and ESR was 85. Was formerly extremely strong and active. I find this affects me mentally as well as physically.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Preceded by persistent dry cough which no one else seemed to catch and didn't respond to medications.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have just been diagnosed on Sept 21st so I have only been on the prednisone for 2 days.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	these conditions are very tenacious, I have thought they were gone but both conditions were just simmering below the surface. When the prednisone dose was lowered they reappeared. My rheumatologist refuses to try any drug but prednisone for treatment. Thanks for the survey
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I thought PMR came on overnight, and you couldn't have it if the symptoms were gradual, the first person to spot the inflamation was my chest specialist, she said my breathing problems were due to inflamation and not asthma, my sed rate then was 75, it has been high for quite sometime, I have had MRI scans on my sacro illiac joints as I told them how stiff I was, but no one mentioned PMR, I also have bursitis in both hips, knee problems, tendonitis.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Going from 100mph one day to finding myself easily tired and in almost constant pain was very difficult to take at first. The steroids have helped but are not a miracle cure - I am still suffering symptoms which I find very difficult given my previous activities and energy levels.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I have only recently had a relapse so am hopeful that I will go into remision soon. Am unable to work at the moment
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Hard to fill out this form in that I was treated for PMR and went into remission for 6 months and just started back on meds.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	The impression given at the start is that medication will relieve the symptoms. It would have been helpful to know when symptoms did not disappear entirely that many people like myself continue to have fairly constant pain of fluctuating levels of intensity even when the improvement from initial symptoms is considerable. This can be difficult for both family and even GP to accept, while it is shown to be common by patient groups and websites. Maybe younger, physically active patients have higher expectations than those diagnosed when very elderly who attribute continuing pain to other problems of age.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	wish some onewould have told me how hard it is to reduce steriods,feel like its a long battle
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	you need to ask loads of questions from other sufferers as to treatments they are having/had as there seems to be little & indiferant info among the medics etc i have also come across a 34yr old with pmr & some 40/50yr olds ! !
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Do as much research as poss before you take Pred. My gp just handed me a one page info sheet on pmr and a script for Pred telling me I would feel marvellous in a few days time. I panicked with Xmas due and 5 people to stay I took the Pred. On researching pmr I am concerned that my intial dosage was too high and tapering too fast.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I am currently taking 10 mg a day and am having some neck pain but do not want to increase my prednisone .
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	My liver function seemed to be adversly affected by the level of inflammation when I initially had symptons of PMR. This and the fact that I did not respond to the initial dose of 15mg made the diagnosis difficult .
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have reacted quite well to the sterid, even though I hate taking them. None of my friends or relatives appear to think I have anything serious and as long as I take the pills thats OK. After listening on line to other sufferers I know it is not that simple. Long term future does worry me greatly. Having no younger relations, I must keep healthy and mobile so I can take care of myself
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	This condition (PMR) appears to be just uncommon enough that my MD was skeptical that I had it, but once he saw response to the trials of Medrol and then Prednisone, he was pretty convinced. Next issue was tapering the med. He was going way too fast (10mg decrements), but agreed to my proposed schedule (derived from extensive internet research, then my own response to treatment). I found that I had to be very assertive and directive to get the treatment that is needed. Fortunately, he has been cooperative up to now; but would still love to dump my case onto a specialist.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	steroids tapered after first two weeks think this was to soon not seen doctor yet now in 4th week of steroids
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	It could be worse - The more info we have the better off we are to take care of ourselves. I am blessed with the best doctors that care about me.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have always felt that my GP has been trying to reduce the steroid to quickly. I can only go on the experiences of others who are on the appropiate websites. I get the impression from those who have had this condition for years, that reducing slowly especially when you are down to single figures, is more beneficial in the long run. I have been coming down 1 mg each month. I have had to ask for another blood test.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	i've learnt that you have to reduce the steroids slowly and in small reductions.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Taper very slowly i only drop 1/4 mg at a time or I relapse
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	this is a very good page,
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	No diagnosis of PMR - just GCA.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Listen to your own body and keep pushing your doctors. What doesn't feel right probably isn't right.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Prior to developing the symptoms of GCA during the summer of 2010 - I was feeling better than I had been for years! It was, therefore, a suprise to develop the more severe condition of GCA. As it was an atypical presentation with no TA involvement - diagnosis took longer and was made with a PET CT scan. I don't think I paced myself well enough during the years with PMR - I was always tired and reluctant to give into it. In retrospect I believe this was a mistake.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have a major problem with the increased bleeding and not knowing i have cut myself and that i am bleeding.I only became aware if this from a PMR web site when a asked this question to fellow suffers. I know the Pred has side effect but when looked at the side effects of the drugs there was so many . I seem to at the moment one of the more luckier patients with this complaint and i have been able to return to work but i feel some of the side effects could have been explained to me by my doctor. I have also had problems finding a Blue steroid card that patients should carry with them , my local chemist Lloyds did not have any! even my doctor did not mention this card . I have also noticed that most of the people suffering from PMR are a lot older than myself (55) and also female , all the info you read on the web is related to female sufferers. On the positive side WWW.PMR&GC.co.uk were so helpful sending me a information pack and the blog they run is so good and informative.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I had multiple colds, and a respiratory infection during the year I was diagnosed. I had a flu shot (included the H1N1 vaccine) a few weeks before diagnosis. I have stopped taking Methotrexate due to severe side effects.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Refer to Q9 response and see a neurologist quickly IF neurological symptoms are experienced.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Difficult for me to fill in your boxes reliably so have left empty as I never expected disease to last so long so never kept accurate record. I developed PMR at age 53 and still have it now age 65. I have had several relapses normally due to shock or extreme stress : Looking after elderly disabled mother, my children injured in car accident leading to one with brain damage and disability, husband diagnosed with cancer, looking after sick friends dogs and rehoming them as she did not recover, falling and breaking collarbone. Also doctor said I would not get rid of PMR while continuing to work which I did until over 60 years as I was self employed and could not afford to give up. I ran a boarding kennel for dogs and we live'over the shop'Very physical work and responsibility. Retired at 60 and half years but have still suffered 3 relapses, now another just started last week. About a year ago I actually felt PMR had gone and was able to reduce dose from 3mg to 21/2, 2, 11/2,1 finally 1 every other day. Then it flared again. On flares have taken 30mg reducing by 5mg per day until back to 3mg. For the last 6 months have been on 2mg no problem until last few weeks so have gone to 3mg. Waiting for blood test results due next week. So now into my 13th year with this inciduous disease.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	l am really grateful for the steroids they helped overnight I do feel however l am now a victim of the steroid use, the side effects are really bad and l no longer feel l am in control.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Prednisolene clearly works, but the side affects are a little frightening. but without them I can turn in bed, get out of the bath etc... its that serious. So at least after 6 months my dose is now decreasing, and apart from the hair loss, things appear ok, for the moment.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	I am limited in doing house work
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I still work full time and have taken only two weeks sick leave in the time since diagnosis I now have a deformed foot which may or may not be related to my condition.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	It is pointless trying to force your body to do the activities you used to enjoy. You only suffer for it later. I have to listen to my body each morning, and then decide what I can manage that day.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I would strongly suggest that anyone getting this diagnosis checks on NHS guidelines what they should be given and what tests they should be sent for as my GP did not put me on low dose aspirin and I had multiple pulmonary embolislms 12 months after my diagnosis. Make sure you contact a support group of forum its vital to have on going support and information which is not offered by GPs
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	i have learned to deal with about 25%to 30 stiffness daily, VS the 100 % i had on the onset....If that is what it takes, i'll deal with it... it took a while to diagnose...be your own advocate...the orthapedic just wanted to give me pain pills,i wanted to know what was wrong with me....i did my own research and discovered this myself with the help of a friend whose husband was a doctor and LISTENED to me and we figured it out...My rhemy thought i was too young, but with a sid rate of 130, he changed his mind....im trying to build up my immune system with good food....i always ate well, but went thru horrible stressful 2 years and wondered if that what brought it on....
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I found and do find the issue of whether I may be developing GCA challenging as I have what I would call subclinical symptoms - and my GP seems quite sure I do not have GCA - I agree but having subclinical symptoms ie. funny headaches which have varied between stinging nettle like feelings in my temples and over my scalp, sort of short lived and not very bad shooting pains, at times an ache in my temples, a mild ache in my temples or TJ joint sometimes when I eat something quite crunchy like nuts, carrots, hard biscuits. This has gone on for about 4 weeks not really getting worse or better in any very definite way and after initial consultations I am ignoring it and can see these symptoms are not enough to trigger further investigation or treatment - hope to find some discussion of GCA symptom development and threshold for doing something and better description of the tricky issue of when to seek help - at present it seems to me there is not much you can do until it gets really bad and not much you can do to prevent it - would this be an indication not to drop my prednisolone - I have dropped it as planned so I shall see I suppose!
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Very discouraging illness. Takes away a lot of your life. Hard to see a light at the end of the tunnel. Chronic pain to deal with.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Do not be fobbed off by doctors telling you its your age, or rheumatism, or arthritis.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have found that most GPs are not very well informed about PMR or the possibility of GCA- regular ESR and CRP testing, DEXA scans, or prednisolone tapering regimes, although I have found one exception.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	would like to try some natural remedies but there is no accuate information to rely on and am not willing to self medicate
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Try and stay positive and seek out people who are prepared to listen, ie join a support group for PMR. Keep active, even if it's only a little stretch every day. Prednisolone 'grabs' the muscles all over your body and downloads pockets of muscle pain - overcome this by stretching out the muscle. Try acupuncture to 'balance' the body to it's former self. Get off the steroids ASAP and suffer the initial 'months' of 'steroid' pain, as it will ease off - it mimics PMR/GCA. Try all the alternative medicines and NSAID. Take plenty of rest and listen to your body. I don't know if I still have PMR after 2 years as I am taking Azathioprine, but I do know that steroids gave me MORE pain in my muscles and joints and it took me at least 7 months to get rid of the 'steroid' pain! There is a difference between the pain of PMR and steroid pain - fight the steroid pain, don't give in!
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I was originally told that this would be one to two years. I am employed full time, enjoy gardening and traveling, but this has made those things difficult. I am depressed about the weight gain and changes in my appearance and would like to be off steroids, but I also would like my pain to be tolerable. I find it frustrating that the rheumatologists I have seen seem focused on eliminating the prednisone not improving my quality of life. Fortunately my internist is a great MD. I also find it frustrating that this seems to be such an unresearched disease especially in the US.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	I am fortunate that ajy pain can be relieved with paracetomol. If I feel even slight pain during night, taking paracetomol ensures that I am without pain when I getup in the morning. This is more frequent when I am reducing dosage. When I am in comfort zone, no pain during the day but do feel slightly woozy mid-morning (possibly too long between food) and generally slightly tired mid-afternoon, when a 20 minute nap is sufficient to feel 'normal'. I take the pred with early beakfast. Whatever the dose, always seem to feel at best socially from teatime to bedtime. This is from about 10 hours after taking the pred.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Find a GP who listens to you and works with you and is willing to acknowledge you might know your body better than they do.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I am unfortunatley not better, and have trouble with walking and moving.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Co Q 10 may have improved my symptoms
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	got a bug bite on rt hip when staying at a vacation rental in Oct last year, thought it might have been bed bug, didn't itch or hurt. Stayed red,a little swollen for many months, still have a red spot almost 6 mos later
Gender = Female Age When Symptoms Started = Unanswered Diagnosed with Giant Cell/Temporal Arteritis = No	feel like I am a 90 year old instead of 68
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Since I was just started on the prednisone, I'm scared to death of all the side effects. I don't want to lose my hair, get a moon face, have thin skin, and gain weight. I'm thinking that I might rather put up with the pain than face that. Haven't spoke to my doc yet (appointment in a couple days) I first started with the hip pain, so when the nurse practitioner and pain (sciatica ) doc were sorting through the causes of my pain, I also told them "it's strange but my arms also are weak and it is difficult for me to lift them." I know they thought I was mental by the look on their face so I didn't push the issue.. ...I never got the PMR diagnosis until 5 months after my first symptoms. At first, I thought I just overdid the exercise at the gym and then everyone seemed to think it was related to my spine, but I kept saying that I had no back pain. I am a nurse anesthetist and I am surrounded by specialists who were quick to tell me what was wrong with a simple description of my pain. They said "oh that's your IT band, then it was "trochanteric bursitis, then SI joint sprain, and finally sciaitca. It wasn't until the annual check up 5 months later that my primary diagnosed me with PMR.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I have found that to taper 1/4 mg at a time is all i can cope with also symptoms much worse if drink coffee
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	I have been diagnosed COPD which I believe is due to the Prednisolone as I never was breathless before. I also now have both Hips very painful so have reduced steroid so that the Sugeon would agree to give me a Hip Operation. The hips have only disintegrated since taking Prednisolone.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I question if this was a abnormal reaction to the aluminium adjunct in the DTAP injection. This symptoms started within a year after the injection. It was a mandatory updated immunization by the hosptial I work for. I am a RN.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I was in remission for over 15 years and then it came back at age 69 with a vengence.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Considering what else there is to go wrong, PMR is a manageable condition. Perhaps I've been fortunate that so far I've not had any flareups. The chemotherapy for the vascullitis was a rotten six months. I do feel a bit anxious that itI will come back I can cope with pain and stiffness if it returns but the fear of losing my sight was very frightening.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Try to keep stress out of your life as much as possible. Keep exercising and moving your body as much as you can, it gets easier. On the other hand, don't push yourself to do too much, if it hurts or creates stress for you. Be patient with yourself and remember, it's not your fault you have this disease. Find a support group, it really helps!
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	At first both myself and my GP thought I had a trapped sciatic nerve. When an MRI scan was eventually done it came back showing nothing and I was then referred by my (very understanding but puzzled) GP to a Neurologist. After many further tests (bloods, brain scan, lumbar puncture, nerve conductivity, electromyography) the Neurologist finally decided it might be PMR and so started me on steroids. Was 100% better after 48 hours. Have since been referred to Rheumatologist who has confirmed diagnosis despite me being only 51 (50 at onset of problems). I was completely well up to the onset of the symptoms (hadn't even had a cold in the previous 6 months) but I had just lost my old horse after having her for 17 years and I think the stress and upset of this could have been a factor.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I am not closely monitored which gets me worried. They do have me take blood tests every few months and then raise or lower meds. No one has explained this disorder to me, I have had to rely on the internet which leaves me with many questions unanswered, such as "why me?"
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I was 47 years old and it took 6months for a physio to diagnose my illness my doctor said I had 2frozen shoulders and 2 tennis elbows I was in agony for 6months and the physio diagnosed me in 5 mins, I couldn't believe it I have had pmr for 12 months and got down to 5 mg of prednisilone then out of the blue I developed gca and ender up taking 40 mg of prednisilone bad times all the side effects weight gain moon face is the worst thing,didn't want to go out got myself down to 10mg now exhausted and night sweats are awful,that's my little winge over .thanks
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Before PMR I could walk for miles, now after 10,000 steps my legs feel like lumps of lead.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	My GP diagnosed this straight away, the ESR blood test helped. It is important to diagnose quickly as this is a frightening experience. I knew something was wrong with an 'overnight flu' episode. Very wierd. I hope this info helps your survey
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	i am now getting regular lydicane/cortisone shots in my hip bursa, lower back and neck - my pain doc is now suggesting radiofrequency ablation. i have had a mri and i now have deteriation (stenosis) in my spine in the lumbar and upper neck areas. i also see a theraputic massuse every week who is trained in fybro. my pain has never gone to 2's or 3's. its either in the 5's or 9's since 2008. i also have a factor 5 laden blood clotting disorder. i also suffer from depression. lyrica never worked for me, i was on it for three months and i gained 40lbs. i have approx 6 doctors.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I searched the internet over andover looking for answers that my doctors couldn't give me I knew there was something afoot but they didnt appear to be listening my primary said after my diagnosis by a rhematologist I thought you were too young! Ha I was 58! It was on the internet I finally found PMR by putting in my symptoms thats when I told my primary what I thought it was
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = Yes	think that the sudden death of my wife within the past 3 years may have been a trigger factor in starting this. Previously was very fit and healthy.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I wonder why if pmr is an autoimmune disease you arent collating family histories on this eg my mother had severe rhe arth my sister hyperthyroidism and my brother vitiligo
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	This illness is very debilitating. I get tired very easily. I seem to have lost half my life because of it, yet to others I mostly do not look ill and get very little sympathy. Even doctors seem to think it's not much of an illness - "the steroids cure the pain so what's the fuss about". I don't hear them say it but I know they think it. Our government gives no financial help at all, yet if I had to cope on my own there have been times when I could not have coped. Pred does take the pain away, but dropping the doses is very hard and the pain returns along with intense weakness. Then there's the mental effects. There have been times when I could have killed myself. My partner has helped me through it all, but after nearly 2 years, I still have PMR. I get great suport now from PMR/GCAUK. At least I know that I'm not on my own.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Very complicated for Consultants ....after the first relapse which slowly sent my ESR up to 70 and a return of the intially symptons .. a Temporal Artery Biopsy showed nothing ...and I was put back on 30 mg steriod for one week ....reducing down to 10mg ...,which improved my symptons immediately . I insisted on a CT scan which showed an * incedentalnoma on the cortex of my right adrenal gland ...meassuring the size of an hens egg ...I had a 24 urine test done and 6weeks later still taking 20mg steriod it was removal by keyhole surgery ..a complete capsualation without it`s own blood supply and lab lab findings inconclusive...I asked about my steriod dose,when nobody gave advice about regulating my steriod intake ...I asked to their endocronologist ..I had bried encounter with a Hospital Diabetic Consultant who had an interest in endocrine and instructed me to reduce from 10mg steriod at 1mg per week ...which brought back all the symptons of GS/PMR ?? ...I refferred myself to Dr Scott Akker Endocronologist at St Bart`s London .Who carried out numerous tests including my first Dexa Bone scan....which was normal ..Pet/CT scan ..lab findings of a tumour of no orign with a tendancy to be maligant ..I see Dr Akker evry six months for a CT and evrything is O K . My problem is now that ...Dr Akker insists it is not adrenal and Dr Guillett Rhueamatology insists it is adrenal . All I know is at present I have aching and stiffness and can hardly walk for pain in my thighs and yet at present after 2 months without steriods my ESR is normal.and yet I also know that if I take 30mg steriod for a couple of days then 10mg for a week then reduce it to 5mg all these symptons will disappear.So I am left not really knowing is it PMR or Adrenal Insufiency ?
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have felt benefit in pain levels by cutting out caffeine and drinking lemon tea
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Have someone that can advocate for you. Also, if you think you have PMR and/or arteritis find healthcare provider to give immediate treatment as this lessens complications and promotes greater resolution of the disease.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	People (families and friends) are not totally understanding when you get PMR. For most people (like me before I got the diagnosis) it is unknown, and you don't look ill. The pain and the fatigue come and go, some days you are your usual self, other days you feel exhausted. It seems hard for other to understand, they expect you to get better! I am Swedish, born and raised in Sweden. PMR should be an illness very much related to Scandinavian descent, but I have never heard of this disease before I got it myself.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	It developed slowly over an 18 month period. I thought it was just general aches and pains related to the menopause however I was gradually getting stiffer and more tired and my appetite changed. I craved sweet things. The pain started in the last 6 months beginning in my arms and then spreading to my shoulders , neck and hips. I got to the point where I could hardly get out of bed in the mornings and was unable to raise my arms above my shoulders and I was worried that i would start having to take time off work. At this point after talking to friends of a similar age I realised that this was more than general aches/pains and decided to go to the doctor. I went in with my list of symptoms thinking that it all sounded so vague she would fob me off . To my surprise she said immediately that she thought it was PMR. I had never heard of it before. One blood test later and I was prescribed 20mg of prednisilone and within 24 hours i felt like a new woman. After 5 weeks the dose was reduced to 15mg and I still felt well. Have been on this dose for 3 weeks and off to doctor tomorrow and hopefully will reduce more but to be quite honest I'm in no hurry.I know its not good to take preds but to be quite honest I am just so relieved to have got my life back at the moment.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	One year prior to acquiring PMR, I fell off a scaffold onto my shoulder----mild separation. Same month---got a shingles vaccine. Father had PLS (similar to ALS). 40 year old son lives with us---has systemic scleroderma, Raynauds, and interstitial lung disease. Always had well water, but filtered----now reverse osmosis. Just trying to connect the dots. Thanks for the site!
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I am new to this forum, and at least see now that what I experience seems to be in the norm (and differnt from what you find on the internet). I thought the steroids are bad but the solve the pain issue. Unfortunately, that is only the case for the first few weeks for me. I think it would be great if there could be more clear advise on what to do against the pain. I know it is not great to use NSAIDS, but on really bad days I take a dicolfenac, either the 12.5 or 25 mg Voltaren over the counter, and that works so well. Paracetamol does not work at all for me.
Gender = Male Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	It took 3 Doctors 3.5 weeks to diagnose but the last, which was a Rheumatologist. I had shoulder surgery and within two days I was hurting all over and unable to function at all. My surgeon gave me pain meds and antibiotic which did nothing for the pain. I hurt from my head to my knees, below my knees no problems. Then went to my family doc and got the same, pain meds, antibiotic pills and antibiotic shots. Still no help. Then was sent to infectous desease doc who ran all kinds of test and put me on more anitibiotics. No help then he sent me to the Rheumatologist and in 15 minutes was diagnosed with PMR. Prescribed Prednisone and then EUREKA!! Three days later after thinking I was going to die I was headed back towards some sort of normalcy. I still have it and am trying my best to get off the Prednisone and everytime I drop my dosage I hurt, nothing like in the beginning but I get uncomfortable for about 10 days. I played sports most of my life and baseball through college which caused broken bones, torn muscles and many injuries but I have never hurt like I did with PMR before Prednisone. I couldn't do anything, not even brush my teeth the pain was so bad. Anyway I've been through a lot but feel like I am getting well.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Coming to terms with PMR is depressing as days are so limiting, but pleased my doctor was astute enough to diagnose straight away. My advise is to get on the website PMRGCAUK ASAP and join to fund research into cause and cure.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I was put on 20 mg 10i the morning 10mg in the afternoon. All the pain was gone in 24 hours but felt sick, tired and terrible. I felt my general doctor did not know much about PMR so I stated my own research into it. I have an appointment with a specialist but not for 2 months after being diagnosed. I dropped my dosage back to 15 mg. 10 in the morning 5 in the afternoon. I felt better but still not good. After 2 weeks I the lower the dosage again To 10 in the morning 2 in the afternoon. Felt much better but not great. I then changed to taking 12 in the morning, slowly feeling better. I started on them 22 May, now 1 June, I have lower my dosage to 10 in the morning. I now don't feel sick and the pain has not returned. I feel 20 mg was too high for me and that was the problem I see the specialist on the 17th June, looking forward to seeing someone who knows more about this condition.
Gender = Female Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = Yes	Loss of balance, must walk with stick. very irritable. Am a career. and find it difficult.Find it difficult to get respite. Never get a real holiday.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I wish more was known about this disease. People think I look fine. It is hard because it has taken away my sense of well being. The doctor said I may be addicted to the prednisone. I told her it was pain that was my problem. I had trouble turning over in bed at night due to back and neck pain. There are many worse diseases out there but I can't help but feel frustrated. Thanks
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	regular appointments with GP and reading online from medically acknowledged websites about the condition
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Don't let anyone tell you that just because you aren't 70 years old, you can't have it. And, knee swelling can be a symptom on the side with hip pain. Swelling isn't always unrelated.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Please more advice and research
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I developed a pain in my chest about 6 months ago which GP said was costochondritis - nothing to be done about it as it would repair itself - this is painful and confuses me about the link with the pmr. Didn't understand how to complete section 17.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Do not delay getting a blood test and diagnosis. I had two months of utter misery waiting for appointments, blood tests, results and treatment. GP wanted to refer me to a rheumatologist where there was a two month wait to be seen. I had to make another appointment and ask for prednisolone as I felt my symptoms were text book, and they were worsening. The PMR association were very helpful and phoned up the GP to stress the need for treatment. The GP still did not name the condition, but I said my symptoms were classic. I do now feel taken seriously.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have struggled to reduce my steroid dose and after four years still cannot reduce to below 5mg, so would urge people to reduce their dose slowly.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Was only fatigued in the beginning. Not so much any more. Pain and stiffness is worse in the PM. Feel weaker than normal.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	PMR is a miserable condition, and because people cannot see pain they dont realise how much you are suffering. so you feel lonely with it. Finding a fellow sufferer helps me You have to get the medication right, to give you a good quality of life. I am still grateful that this is ALL I have got, I watched my mother in law and father in law die of cancer, and too my mother, who suffered horribly at the end, which is when I got PMR, I believe I was so stressed at the time. This came out. I could hardly walk at her funeral. Was given steroids that same day, total relief the next day! with 20mgs But 18months on, I am in still in pain and trying to taper off steroids, as someone said here, the withdrawal symptoms are exactly the same as why you are on them which is frustrating. Keep calm and carry on is my motto.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Nothing more yet but am just starting my long term relationship with my consultant
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I was doing a PhD full-time and looking after my elderly mother but when she had a fall just after my viva so I couldn’t relax when I graduated in December 2012. I was also still running my complementary therapy practice as well as spearheading a campaign all the time I was doing the PhD. A month after I graduated I became depressed and fatigued and started to get aches and pains in my wrists, back and hips. I put it all down to doing too much. I then developed a chronic kidney infection, which did not respond to antibiotics. A scan showed kidney scarring so my GP put me on a course of nitrofurantoin and then daily as prophylaxis. This was in August 2012. I then developed flu-like symptoms and was aching all over, which I thought was a side-effect of the antibiotic. Suddenly, one morning in September 2012, I couldn’t get out of bed without help. The pain and stiffness in my upper back and shoulders was so bad it felt as though I had been flayed. My bones and skin hurt to the touch in these areas. I do feel the nitrofurantoin was the straw that broke the camel’s back.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I was lucky to have a GP who had suffered from PMR himself and who also consulted a Rheumatologist who understood the disease, so I was diagnosed quickly
Gender = Female Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = No	I am 80, and take no medications at all, but have taken a raft of supplements (listed below) for over 25 years, and have been told I look and act 70.I realise that I have suffered from PMR for only three months thus far, so things may change for the worse, but, my experience thus far has been that the pain and stiffness reached a crescendo after about two months, and have now seem to have reached a plateau, which I hope is as a result of my own approach to dealing with the disease, something that has taken much research (I am a researcher by profession, once having been a research assistant at Stanford University), and a considerable amount of trial and error and trying to correlate what with what.... I should also add that I was born with bad hip dysplasia, which remained undiagnosed by conventional doctors until I was 50, when it was discovered by an osteopath. During those 50 years I lived in constant pain, with my hip often coming out of the socket, but when I complained was accused by our family GP of malingering, so I learnt to live with it, assuming that everyone else was the same. As a result of this, it's possible that my pain threshold is higher than that of most people, leaving me able to cope thus far without having to resort to steroids... So, as everything I have read on this site thus far includes the taking of steroids, perhaps my own approach may be of help to others anyway: After my diagnosis I returned to my osteopath who is also an acupuncturist, and have been receiving acupuncture from him. In mid November, 2013 I had another blood test, and my SED had risen to 81, and my GP left me a phone message to go to see him to discuss it. As his only form of 'discussion' is to insist that I take steroids, I have not been to see him since. In the meantime, I have been trying to come up with a formula of alternative therapies to keep me in sufficiently good shape to continue looking after myself. At first I did begin to have trouble getting out of bed in the morning, but have now reached the stage where I have little or no stiffness, and can lift my arms above my head the minute I get out of bed, and get washed and dressed without difficulty, all thanks to the acupuncture, along with a cocktail of homeopathic remedies (Chamomilla, Sanguinaria, Bryonia, Rhus Tox to prevent the stiffness, and homeopathic sleep aid, Noctura, by Nelson). The PMR does not really bother me during the day, unless I sit too long in one position, which I tend to do, being a novelist and writing on my computer most of the day, but the minute I go to bed at night is when I am most likely to have a problem, because that's when the gnawing pain, which can drive me out of bed on some nights, starts. Each dose of homeopathics, however, allows me to sleep pain free for about three hours, after which I repeat the dose during the night, and while I do get the odd night when nothing works effectively, for the most part I get a reasonable amount of quality sleep, and don't feel exhausted. when I get up. I also take the adaptogen, CHAGA, which I think explains why I don't get depressed by this. Whatever it is I am doing, the end result SO FAR is that I am not tempted in any way to resort to steroids. My main worry is that I am obviously very scared of getting GCA, so every little niggle anywhere near my head sends me into a panic. Assuming any other characteristics about a person could prove useful in the study of the causes of PMR, I should add that a) I live on a busy town street where I am subjected to a constant flow of diesel fumes whenever I step out of the front door, and b) I suffered from traditional migraines from the age of six, until the menopause, when they first morphed into optical migraines, then into horrendous panic attacks, until the summer of 2011 -- after the traumatic death of my sister -- they morphed into an attack of transient global amnesia. (TGA) Incidentally, my own research diagnosed TGA, but my GP refused to believe me, and sent me to a stroke specialist because he was convinced I'd had a stroke. The stroke specialist confirmed my diagnosis in a letter to my GP, who left me for three months without telling me, allowing me to struggle with the idea that I had had a stroke. I think I'll write a book on all the reasons I have to avoid GPs. I don't trust them at all for all their misdiagnoses, uses of chemicals that kill, including my husband at the age of 43. But I digress. For years I have never eaten anything with artificial additives, and only rarely will eat a pre-prepared food. I eat organic whenever possible, and eat masses of vegetables, steamed. My downfall where PMR is concerned maybe that, having type O blood, I eat too much meat, although little of it red meat. Incidentally, has anyone correlated blood type with PMR? Oh! And for the last sixty years I have had a 1/4 cup vodka mixed with 1/4 cup martini every evening before my dinner.... Supplements: CoQ10, Vit D3, high strength vit B complex, Ester C, Calcium/magnesium citrate, MSM, Selenium, Omega 3 fish oil, Cod liver oil, Zinc/copper, Vit E, Evening Primrose, Hawthorn, Milk Thistle, and to make the pharmaceutical companies happy, for the last month I have been taking one 400 mg Ibuprofen a day, with my breakfast. And I guess that's it.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	Make certain that you seek a medical practitioner who is conversant with PMR and who will regularly check your prescription and ESR and all necessary tests rather than leave it up to you. I personally feel that I am managing my particular disability reasonably well and just with that I had not reduced the prescription (albeit with my doctor's consent) as I feel certain now that I need 10mg Prednisone daily.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I am still trying to understand my diagnosis of PMR. I have had to research & learn about PMR et.al on my own & struggle to get useful info from my Rheumatologist. Recently I changed Primary Care MD, as previous one down played the diagnosis. Which only complicated my acceptance & treatment. So if you are not getting answers to your questions keep asking, or change MD's. It is a daily struggle with GOOD days, BAD days, and confusing days... So I keep a journal! It is easier as my brain gets tired trying to keep track of my symptoms etc. The Prednisone is tough to handle most days , but when I think back to when the symptoms of PMR first invaded my life, I realize that the medication is a necessity for now. There are those that are going through much worse and that I am fortunate that this is what I have to deal with... It could be worse. I will not lose hope or faith that this too shall pass... Until then, I no longer beat myself up when I feel depressed or useless and old. I have made myself #1 in my life (a 1st for me). I try to get outside every day and smell the roses!!! PMR doesn't get to win!!! I DO!!!
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Having difficulty reducing the prednisione. Got down to 8 mg. things went fine for a few weeks . then difficulty walking. went up to 10 mg. That was fine for a few months and then a flair up almost like the first time. Upped to 13 mgs and seeing Specialist tomorrow.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	In june 2012 i began to experience severe pain in my right shoulder. Eventually i paid to see a consultant who diagnosed arthritis and advised cortisone injection. This had no effect at all and in January of the following year I had surgery which has proved very successful. Last november is was having severe pain in my right knee which was also diagnosed as arthritis and my doctor gave me a cortisone injection which has been very successful. I am now in my 6 th year of pmr and my doctor has said my ESR is very good which is positive. However i am very distressed because i have very little strength in my muscles and some discomfort.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	No one has any idea how ill and helpless you feel, because it goes on for so long people forget, prednisone enables you to live a normal life. I have a love hate relationship with the drug. I have mostly good days, it has been a challenge to try and separate the symptoms of prednisone reduction with PMR flares. Blood tests can tell the truth there, but I am reluctant to keep running to the Dr to have the test, just hope it is prednisone related and it will go away. Presently I am hoping that the reduction in prednisone will continue and I will not experience another flare, moving cities will be stressful and I am not confident that I will manage without upping the dose. It seems like it is never ending and I sometimes loose confidence that I will ever be free of it.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I had an immediate and total response to prednisone. My tapering has been very rapid (form 20mg to 2.5 in 4 months). I was doing great until 2.5 and theb had to go back to 6 mg. now tapering down 1 mg every two weeks. This is the most confusing disease. You have no idea what is wrong with you. The reaction to prednisone is so stunningly successful that you can forget that you actually still have the disease and that you are just masking the symptoms. I think the official numbers of the prevalence of this disease are bunk. Since my diagnosis so many. People I meet have PMR. The real number is much higher.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Networking in the community put me in contact with people who had, or have, PMR. That, together with the on-line forums and websites has been extremely helpful and supportive. All 4 of my friends who had/have PMR spent many months trying to get a diagnosis. I was very, very fortunate to be diagnosed so quickly. I had my regular annual physical in September of this year and all was good, including all bloodwork. 6 mos. Later when I had additional bloodwork...ESR, CRP, etc. My rheumatologist thought it was very telling. My regular physician, who is a very good diagnostician, was going off in quite another direction, but fortunately sent me to the rheumatologist right away. The rheumatologist has been communicating with me and adjusting the prednisone dose via a on-line portal which is available at the medical center in my hometown. It is encouraging to know people who have completely recovered. Unfortunately, the people who are still suffering remain on line; wish there was a website just for people who have come through it! Thank you.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	what can i do to strengthen my upper arms with out doing damage
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	my muscles are all affected by this poly. i have now developed a sensitive throat.i have choked several times lately and a crust slit a vein in my throat.. just have to be careful. most muscles hurt.i have psoriotic arthritis too this deforms your joints and makes them swell.so if its not the muscles hurting its the bones. ihave problems sitting or standing for long .please check to see if you have the gene.it can mean like me you are stuck with this poly .i have a number of allergies cope with em but it may be a pointer that you have immune problems.my body rejects lot of things after a while which means i have to change medication to avoid that. highly reccomend low dose naltrexone but have to get it private as nhs dont provide.shame.but it becomes less effective when on steroids please look it up.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	When I was 1st diagnosed with PMR, none of the research included trochanteric bursitis as symptomatic of PMR. Now, however, I have read that it is being acknowledged as a symptom.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I did not know what PMR stands for. I knew I had RA, but PMR is WORSE! Much more painful
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	PMR is a life changing illness. I have found the whole process very challenging both mentally and physically. I have had to adapt my lifestyle massively and currently I am focussing on getting into easier accommodation without the burden of gardening and lots of housework. I have had to curtail lots of the activities I previously enjoyed with my grandchildren. It can be a depressing condition and the side effects of the steroid treatment are unpleasant.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	For the past four years I have suffered from spinal stenosis. I am sometimes unsure which of the two conditions are causing which symptoms. I would strongly recommend newly diagnosed patients to have contact with fellow sufferers e.g via an online forum or support group as doctors seem to have little knowledge of the wider implications of the condition.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Need to complete medications, Atenalol, Amlodipine, Atorvastatin. (essential hypertension diagnosed 30 years ago, no pheachromocytoma. Hypothyroidism 15years plus). Iron/vitamins when time to take! Vegetarian.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Stressful situations result in increased pain
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Take each day as it comes. listen to what your body is telling you. I found my family not very supportive, I think they feel I am ill all the time, I think because of the moon face we look well. when I had surgery on my joints my family were very supportive but pmr is invisible and not well known so maybe that is the reason. my thoughts are with everyone with pmr/gca, new and old, hoping you find light at the end of the tunnel x
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	My initial tapering was too fast and the quick drop to 10 mg caused symptoms to reappear, but not as harsh as when I started. I was then told to try Methotextrate and drop to 7.5. The Metho was ineffective and the drop to 7.5 was too much too soon. A new, much younger, rheumatologist told me to stop the Metho (I didn't want it anyway, so I liked this thoughts) as its use was "old school" and not all that effective. The risk reward of the Metho was questionable in his opinion. I then started a slow tapering from 12.5 to 12 to 11.5, 11 and am now starting 10.5. This was over a 6 week period. The tapering was augmented with Naproxen as needed (not often). This has been successful to so far and I plan to continue dropping in .5 MG segments every 10 or 12 days, until I hit a wall and will then taper more slowly. The first Dr. wanted quick 2.5 mg tapers, which seemed to quick. The second Dr. worked with me and agreed with the much slower taper, which appears to be working. A 2.5 mg taper is a drop of 16.6% from 15, but 25% from 10 mg.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Have had PMR for 5 years. Two relapses when medication stopped. Now have diabetes and painful swollen hands (awaiting diagnosis) and awaiting medication.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I do believe, an increase in calcium AND magnesium is VERY important. Magnesium intake is helpful for nerves and muscles. Muscles and tendons are effected with PMR. Certain foods should be avoided like tomatoes, eggs, nuts and citrus. I noticed that a flare would happen due to not eating as healthy as possible also. All sweet desserts and cakes should be avoided.....and most of all ALL preservatives.....mostly eating ORGANIC. TRYING TO AVOID STRESS!!!
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Lower doses have made me very tired. I consistently nap usually 30 minutes every afternoon. Higher dose made me euphoric.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	For someone in their early 50s the delay in diagnosis is shameful. I lost my job and mobility and healthy lifestyle. I am still struggling with symptoms while my GP berets me for being on a high dose of steroids ! Very few people think I am unwell as you look normal it is a devastating condition and the support from the health professionals is woefully inadequate.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I continue on low dose prednisone. I would like to be free of the drug but it seems that there is a level below which I cannot go.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I did well until I reached 5mg. I tried to decrease to quickly from there and during a time of stress (which I feel very strongly affects my PMR) that resulted in a rather nasty flare (although not bedridden as some find themselves). I had to increase my dose of prednisone from 1mg to 2mg which, after 2 weeks with only slight improvement, I have gone back to 5mg. I will remain there for a month or so depending on how I feel. I'll then begin a VERY slow reduction plan that is used by Eileen on the Patient UK PMR forum. As with all of us on prednisone we have a love/hate relationship with it and I hope to be able to get off of it in time. Patience is the key as I have learned the hard way. It is also important to find the lowest dose that manages your symptoms before attempting to do any further decreases so you have an idea of where you may need to go back to if you have a flare up. That forum is an indispensable source of information and support and I am so glad to have found it. I have recommended it to my Rheumy and hope he will find the information helpful when treating his patients with PMR and GCA. FYI - I am from British Columbia, Canada Thank you for doing this survey. PMR is little understood by many GP's and even Rheumys and, since I have been diagnosed I have come in contact with many people that have, have had or know someone that has been affected by this disease.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Do your own research. Question everything. Pay for private tests if it will save diagnosis time. (e.g. MRI scan to eliminate sinister pathology)
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I sprained a knee and had minor surgery to remove a basal cell carcinoma at month 10 and my symptoms came back. Upped pred to 15 from 8 and symptoms are 80% gone.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Swedish/German heritage. Fatigue, mind fatigue, depressed, tired body. Difficulty focusing, getting motivated to do anything. Mornings are the worst, currently having increase in sx. especially cement legs and lower back/buttock pain that makes it difficult to walk. Better in pm. Pain/inflammation moves around - carpal tunnel pain both arms for 3-4 weeks then gone. Neck stiffness, numbness in hands, painful upper arms - 2-3 weeks then gone. Leg/foot cramps for couple months then gone, then back.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Insist on second opition if you have any doubts - a simple blood test to confirm or otherwise any change in APR, CPR and ESR. From a personal point of view do some research as there is a lack of it with PMR/GCA and GP are not always aware of 'symptoms' or dialogising correctly.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	when reducing the steroid say from 10mg to 9mg I started alternate days for a week 10mg one day 9mg the next if I felt ok I then went on 9mg for a month, This did help with withdrawal symtoms, unfortunately I seem to have a lot of "Flare ups" and have to increase steroids, Such a frustrating illness.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	No referral to rheumy by GP until I was six years into pmr... I was told by physiotherapy department they needed me to see a rheumatologist, my gp referred me, there was a 12 week wait. Shocking.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have found that it suits me better to take my steroid dosage 50% morning, 50% late afternoon. I was quite surprised to notice that, like me, a good number of PMR sufferers I have spoken with say that their condition followed a chesty flu-like condition and I wonder if there is any significance in this. During my life (I am 68) I have never had much time to take exercise. About a year before I was diagnosed with PMR I took up Nordic Walking but stopped it with the onset of PMR. In Nordic Walking I was using all the muscles which PMR affected (neck, shoulders, arms, hips) and I wonder if there is any connection.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	please tell me are their any research going on in the usa....is this hereditary??? did I catch something, if yes, what??? will it go away???
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Over excersise makes it worse. I was 48 when it started. I had a long stressful time before the onset.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have just started Predisone - first time last night: 60mg daily for 5 days then taper to 50mg/5 days, 40mg/5 days, 30mg/5 days, 20mg/5 days, 10mg/5 days. I don't have any side effects yet, but, after one 60mg dose, the pain was GONE! I did get so drowsy/druggy that I feel asleep in one hour after the first dosage. So, I am wondering if I should take the rest of dosages at night or at least in late afternoon?
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I was given hardly any information about PMR or GCA when I was diagnosed. To be fair, I was squeezed in at the end of the clinic and the doctor had very kindly seen me at short notice. Having said that, I really needed more information. I knew very little about this illness, and because it was the Christmas period, I had difficulty getting in touch with the rheumatology nurse to find out any more. Thank goodness for the internet. Without these websites, I would have been totally lost. If I could give any advice to the doctors who make the diagnoses, it would be to point patients to sources of information, and PLEASE don't leave us in the dark, not knowing what to expect. To any other patients, I would advise you to find out what you can from your doctors/nurses, but most of my information has come from the forums on the internet. These have been invaluable to me. I don't know what I would have done without them. In particular, I knew nothing about steroids. In my opinion, you shouldn't be on steroids without enough information to know what you're doing and how to reduce safely.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Am early on in diagnosis and treatment. Will complete a further survey further on in my treatment. Am willing to be contacted in the interests of research
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	My original diagnosis came very soon after starting exercises (lunges and squats) in fitness/muscle preparation for a skiing holiday. I didn't make any association with the lunges/squats and worsening symptoms at the time though and presumed it was coincidence. Whilst skiing, I tore my right leg ACL, MCL and fractured my tibia. On returning home from holiday i gained weight due to lack of ability to exercise to counter the steroid weight gain. I started physiotherapy with gradual exercises to rehabilitate my right knee after the skiing accident, but 2 months later my physiotherapist increased this therapy to include lunges and squats. It took only 3 days of these 2 new exercises and my PMR was back with a vengeance - first my hips and lower back, spreading to minor pain in my shoulders and neck. I made a personal association between the lunges and and return of my PMR symptoms. I have stopped going to the physiotherapist, stopped doing harsher rehab exercises and managed to reduce the pain and the steroids are back to my normal dosage. I am continuing with my own gentle exercises for the ACL therapy and doing stationary cycling while I get a handle on my condition myself and listen to my own body as it concerns me that physics don't have enough knowledge of PMR yet to ensure exercises are within the capability of the disease.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I started treatment only 7 weeks ago and I am slowly tapering from the Prednisone and now down to 10mg daily.I suffered from the condition of 'dry eye' ( diagnosed by my ophthalmologist ) several months prior to the diagnosis and a low grade fever for several weeks prior to the diagnosis of PMR . With each taper of dosage I feel the PMR symptoms returning to a lesser extent but they settle after a few days. I have been prescribed bisphosphates, vitamin D and calcium due to low bone density after dexascan but have chosen not to take them due to potential side effects. I have changed my diet in the hope that this will help to alleviate any bone loss. I was given 40 mg of Prednisone 6 months prior to the onset of PMR during a bout of 'flu which resulted in a chest infection and wheeze. The high dose caused fluid retention, elevated blood pressure and breathlessness. I was reluctant to take the Prednisone for this reason but it appears the moderate starting dose of 15 mg for the PMR produced these side effects to a lesser extent which have settled.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Spent the first year with PMR jumping around on the dose because my rheumatologist encouraged me to taper whenever possible and I was encountering flares along the way...and had not found the forum! On January 1, 2015 (11 months into treatment) I started "Lodgers" regimen of tapering and it worked wonderfully u til I went from 7 mg to 6 mg. I now understand the danger of the 7 mg dose. I am back up to 10 mg. As soon as I feel well enough I will go back to Lodgers tapering....and may consider lowering at .5 rather than a whole mg...will test it out. Next time I feel a flare I will not hesitate to up the dose and get it under control.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I suffer frequent migraines also
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	When first diagnosed my ESR was 127 and CRP 123.7. After three weeks ESR was 95 and CRP 32. I was told to reduce from 20mg to15mg which proved disastrous and I feel was too early to start reducing. My rheumatologist seemed to think that the steroids took away all the symptoms of PMR and I could carry on as normal. His main aim was to reduce the dose to 10mg as quickly as possible which caused a lot of problems. I found the knowledge of PMR both from my GP and rheumatologist very limited. I was not given vit D and calcium or checked for vit D deficiency. When I asked to be I was told by the rheumatologist it was not necessary. My GP agreed to a blood test which showed I was vit D deficient. If better training were to be given on PMR diagnosis and treatment it would make a world of difference to sufferers and reduce a lot of the pain that patients go through.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I would just say that the most important thing you can do is speak up for yourself and insist that you be given relief from your symptoms.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I think it is important to have contact with others that have PMR. The Patient UK forum has been the best thing I could have found. Tell friends and family how this disease affects you. It is hard for them to understand why you have changed so much when you look good. Prednisone is your friend. Don't fight it and try to get off this drug. Only with patience and very, very slow reductions will you get to the dose that manages your symptoms. If you don't get to 0 but are at a dose of 5mg or below you can do almost everything without the side affects. I was great at 4mg. Should have stayed there for a longer. Be good to yourself and don't ask to much of your body.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Only on predniolone for 5 weeks as resisted starting them due to awful side effects. Took dietary advice and homeopathy treatments. Developed headaches and jaw pain. Also eyeballs were painful but no blurred vision. Decided I needed steroids to prevent any complications. Started on 40mgs for 1 week. Good pain relief after 3 to 4 dys. Then 35 mgs for week. Then 30 mgs for week. Then 25 mgs for wk and now have been on 20 for week.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Nutrition, lifestyle adjustments, holistic management of the disease is nonexistent in the traditional medical community. You have to do the research yourself and become very proactive, assertive in your journey to wellness.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I found reading about pmr online to be the most informative and comforting. My rheumatologist told me 90% of people who get pmr resolves and doesn't come back. Hey! Hey!!
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Came on gradually, mainly fatigue and stiffness until I upped exercise so much then pain in legs and shoulders, thought exercise would help the stiffness. Provisionally diagnosed at first GP consultation, blood sample following day and trial of preds the following one. In retrospect PMR was probably hovering for about a year before.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Prior to diagnosis I lost 7lbs in 2 weeks despite eating normally and being inactive. At the same time I had intermittent slight fevers and a dry cough. All of this stopped when I was treated with Prednisolone.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I DO NOT HAVE PMR - this is a very frustrating survey but I have done my best to ensure that the information I have given is as accurate as possible. I feel that weekly blood tests need to be done and results made available faster than 10 days - how else can one keep a reduction programme accurate ? I MUST get off these steroids - no-one ever mention that I would have to take them for life and I have no intentions of doing so.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I would have liked better guidance regarding the tapering schedule. First of all, I did not know that only the pain was being controlled, but the actual disease is likely to be in my system for a couple more years (if I'm lucky that is!). I did not realize that it might take a few days for my body to respond to the lowered doses by flaring up the inflammation again, so I galloped right past the point where I should have paused. I definitely think that when tapering from relatively low dose (like 10 mg) it should be done extremely slowly, which I am about to start once I feel stable again at the 10 mg. I had been instructed to taper at the rate of 1 mg per week after four weeks of taking 15 mg. I now expect to take roughly a month to taper to 9, and we'll see how it goes from there.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	I feel that the rheumatologists I have seen (2 of them) have been too quick to throw a diagnosis at me and are not exploring widely enough. I am only 47. I am healthy, in good shape, not overweight with no other health complications. Just pain. ESR is normal. C-reactive protein and CREATINE KINASE are both 'slightly' raised - not off the charts. The rheumatologist I saw yesterday basically threw prednisone at me and told me to start on 60mg and call him in a week! He did not mention any of the side effects, nor did he offer any follow up checks to monitor my condition. I am going to try to tough this out. I can still walk and function, just much slower than I was.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Exercise is the way to go - I get to the swimming baths and exercise as much as possible. I have had terrible emotional mood swings but they now seem to be under control.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Started low dose HRT (blood tests showed low oestrogen levels) and surprisingly experienced relief in hip pain after 3months. Wanted to try anything possible before trying steroids however, started to develop frozen shoulder in left arm so agreed to steroid injection. Experienced Total pain relief after injection and got my life back so then agreed to start prednisolone tablets at lowest dose possible to keep me active and largely pain free. I have noticed that stress ( my dog died) and increased activity can trigger increase in pain. But recognizing symptoms and increasing prednisolone to prior tapering dose for 3days settles things back down. It's difficult for family and freinds to understand,I'm lucky that I have communicated with my husband throughout so I have someone who understands if I'm having a bad Day. On these days I rest as much as possible and return to activity once pain is under control. I also pay attention to what I eat, fruit veg and either fish or chicken. I find eating carbohydrates can cause me an issue, and I have cut sugar intake as much as possible. Bit c supplements ( effervescent type with added b vitamins) are a great help in addressing tiredness and inflamation I take morning and evening.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	My opinion: the triggering events for my PMR ; Physical trauma, in my case, two spinal surgeries followed by knee replacement surgery Stress, extreme family issues, beyond my control Emotional distress All contributed to "perfect storm" resulting in PMR. Coincidentally, the 85 year old father of a friend, was dx with PMR and started on pred. He said he must have been in a Catholic hospital, because he had just experienced a miracle (10 hours after receiving first dose of pred). He remains on pred today, 2.5 years later. He lives in Wisconsin, USA Pred is not as horrible as I origionally thought. After the first weeks, which were pretty terrible(emotional, paranoid , ,etc) I settled down and accepted the reality that pred had given me my life back. I would/could deal with the annoying side effects (none major for me), and would come out the other side of this nasty disorder. On line forum, Health unlocked,UK, has been my absolute lifeline. Any time day or night, someone is there to offer reassurance, sympathy and advice. Absolutely essential to my survival. Thanks
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I consider the past 2 years to have been a nightmare, I have all the classic symptoms of GCA and have had possible symptoms of polymyalgia for several years. If it was not for my GP listening to me and prescribing steroids I believe I could have lost my sight, I had severe scalp tenderness for 18 months prior to diagnosis and visual disturbances alongside jaw codification tinnitus and whitening of face. I have been told by different health professionals that I am too young to have this condition. I am a nurse and cannot believe the total lack of respect and lack of basic communication skills (listening) that I have experienced. I am now being advised that I have to reduce steroids and have been advised that I should consider azathioprine when there is no evidence that this will be effective for GCA. I feel I am managing the condition myself most of the time.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I wrote a PC application to record, monitor and display the progress of the illness. This is available to other sufferers for free. It is also suitable for diabetics.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	They have just recently figured out what was wrong with me. I don't feel as though doctors know enough about this condition or if they even understand how debilitating this condition is.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I started to take statins about ten years ago. My joints ached and I had lots of dead leg feelings. I feel that statins are too blame for a lot of howdy I am today. My diabetes was confirmed a few years after taking statins. I feel not a lot of long term effects from statins has been carried out. If this is the case then I feel this could have been prevented and I wouldn't be on as many bad side effect drugs and the NHS would have saved a fortune with unessasary drugs!'!!,
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	People have a hard time actually looking at you as a person with a real disease ( unless they saw you at your worst)
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I feel like I'm on a roller coaster and my symptoms vary daily and weekly. When you don't feel well for a period of time it gets depressing because you feel like you're never gong to be normal again. Before I was diagnosed at 53, I questioned whether everyone felt as bad as I felt in their 50's and if it was normal. I was having difficulty getting out of bed, getting dressed, and getting in and out of my car which seemed ridiculous to me which prompted me to do online research and discover PMR which I had every symptom of.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Definite pattern for me - sunshine I am must better ( summer months), holidays better. Winter months higher ESR score and I ache more. When stressed at work the score goes up higher and i feel worse. Also had bursas in my thigh but went quite quickly with antibiotics and now have Contacontridus - not sure if definite connection. When I have a cold, lose my voice and generally under the weather the ESR goes up.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Try to get enough rest. Rest in day also as required. Excercise as you can without exausting yourself. Walking, gardening swimming if possible. I find sauna unhelpfull it exhausts me. I have been struggling with PMR for eight years now a roller coaster. A reducing dose of Predisilone over many months then as symptoms increase back to the begining again.
Gender = Female Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = Yes	GCA I had a painful attack of severe chest pain lasting about 10 minutes where my upper arms and chest in between were gripped with excruciating pain. I have no radial pulses.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	After finding support knee high stockings benificial on long haul flights I decided to give them a try on a daily basis to see if it helped with swollen ankles at the end of the day and also with leg fatigue when walking. The improvement on swelling has been quite marked - initially I reckoned to walk 25% further with fatigue kicking in although did not continue to progress further as I had hoped.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Have to stay positive, keep moving even when it hurts. Do what you can. I get up every hour from my desk and go for a short walk and climb some stairs. Read everything you can and inform others what to look for and expect.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	This is a difficult disease to cope with but the best you can do is to try and live your life as best you can. There are good days and bad days. The thing that helps me most is going out with my husband for lunch and a short walk afterwards. Perhaps even treat yourself occasionally to a small purchase that gives you pleasure.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Read as much information on PMR as possible, although every individual's response is different. Realise that you do have an illness and it may be long term. Prednisolone which is prescribed for PMR(and GCA) is very unpleasant as far as its side effects, but without it, the illness does not normally improve. Having only been diagnosed with this just a few months ago I am learning to live with it and don't know how long I will have to be on the steroid regime. Having started at 40mg and now down to 10mg these past few days I am now feeling a bit more "in control" of myself. The PMR diagnosis was actually a relief because I was beginning to wonder if there was something more serious going on in view of the fact that I could hardly walk 100 yards without my legs aching so much. I was also in severe pain with my lower back and having had spinal problems in the past I had an MRI to rule out anything sinister. Although the excessive pain in my lower back is much easier now, I have been diagnosed with spinal stenosis but at present it is manageable with analgesics when necessary. It was some months before I was diagnosed, due mainly to the fact that at my age I just put it down to "getting on a bit"
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Like many others I am finding that, because I look well, family members have trouble accepting that I am unable to be as physically active as I was before. I am attempting to carry on with my life as I was previously but have already found that I pay for overdoing things! For example, last week was very busy and stressful as we had to travel 180 miles to visit my 95 year old mother-in-law who has recently moved in to residential care. Following this we spent two days with our son who was moving. Subsequent to this I have felt more fatigued than previously with a an increase in shoulder pain and a slight return of stiffness after inactivity.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I don't know if the Prednisolon or the PMR is causing some days that my vision is blurry. I allways had excelent distant vision which now seems to be less. Can Prednisolon or PMR cause depression? I have never had depression in my life,but feel pretty low right now.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I think there were early symptoms which I put down to age before full blown pmr symptoms
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	It seems that everything is geared up for taking steroids and that afterwards, it's all about steroid use and how to come off them. My GP wasn't expecting me to say no. She liased with the rheumatologist and offered injections but I have managed to avoid these too. I have 2 friends who have suffered terribly with side effects of steroids and it has motivated me hugely. The pain of this condition has been a real eye opener. I was fortunate to have a very supportive partner during the whole process as so many activities of daily living have been affected. Also, they were good to me at work, allowing me a phased return that I could do myself (although on a reduced wage, I have had to support myself). I am still below par in my energy and strength but so enjoying being able to get out of the bath 'normally' recently and to be able to walk up the stairs without having to go on all fours. I have nothing but admiration for anyone who experiences this when older and less fit than I was. I wonder if my mam had this but was not diagnosed? She had dementia for the last few years of her life but experienced a lot of hip and shoulder pain and was told it was 'old age and arthritis'. I have such concerns that the mostly female/older lady patient profile has meant that this extremely painful condition has been under-reported and given low priority. I hope they can find a healthy way of treating this illness. Thank you for running this survey.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	My medics have not shared my blood test results with me. I am not confident that they are alert for GCA. Emphasis is all on coming off Prednisolone.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	It is very difficult to feel that I am self treating. I am using the dead slow reduction plan and dr didn't I even want to see me for 3 months. I see a rheum in 3 weeks. Hoping for more awareness
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I did not fill out the dosage section, but I could...I have kept a detailed record of my dosage of prednisone and each flare...when it occurred and what the effects were...I don't have those in front of me at the moment. If I can refer back t this survey with that information I will. I was late to realize the importance of a slow reduction...everything of value I have learned from the forum!
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	My rheumatologist has now given me a diagnosis of sero negative spondyalaropathy as he says I'm too young to have PMR. I believe I have PMR
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I am a professor of medicine and still believe that this is a viral infection in a genetically susceptible host. I would like to see research using metagenomics to look for a viral cause.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Poor support due to lack of knowledge of the disorder by friends, family, and even medical providers. Difficulty working and having to limit work and put undue finacial strain on myself. I am the owner, director, and primary physician for my chiropractic practice. If I dont work, no money comes in and bills rise. I am unable to collect disability unless out of work for over a year and by then I would be homeless and starving. I am only 52 years old and have limited funds saved... I didnt plan well and expected to be able to work for at least 15 more years at a full time status.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	My first 6 months I was on my own, and tried to get of the prednisone. had a relapse temporary vision loss and stiffness . Ask for a Rheumatologist & have been managed well. On a reduction plan toward zero over the next few month.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Moderate physical activity (swimming, walking, yoga) very helpful in dealing with various symptoms both before and after starting prednisone.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Sorry so not have records of dosages of pred over the 7 years. Most difficult drop is 1mg to nil.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	--- I believe stress was my major trigger. I spent over seven months caretaking my dying mother and got little sleep and was feeling ill from so much stress. My PMR symptoms started about three months after her death. --- My doctor agreed to let me manage my own taper after her protocol seemed too fast and I had a flare at 8 MG and had to go to a higher dose again. I am now at 7MG having switched to the slower method mentioned by the PMRGCA forum after the flare, having to raise meds and restart the taper. --- I have learned to say "no" to activities and prioritize my time/energy better. Somewhat reluctantly of course because it means admitting that this has had an impact on my life. It can be a rough emotional ride, not helped by the daily massive weepfests I had when I was on my higher dose of prednisone.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I think more information about PMR and the side effects of prednisone needs to be given at diagnosis. The more knowledge we have, the better able we are to care for ourselves. In addition, information about on line resources and support groups needs to be given as well.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Speed of diagnosis was instumental in me being able to resume exercise within weeks of starting pred and fairly quickly build fitness level back to where it was before diagnosis. 3 month delay in getting pred was due to excluding other possibilities e.g. I had barium enema which took a while to get appt.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Sorry do not have records of dosages of pred over the 7 years. Most difficult drop is 1mg to nil.a
Gender = Unanswered Age When Symptoms Started = Unanswered Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	My doctor picked up my fairly classical symptoms very quickly and put me on 20mg of prednisolone so I was out of pain very quickly. He also gave me Adcal-D3 and alondronic acid but I have had no other checks in five months.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	No tests at all done except initial blood test to check inflammation. Not told about GCA. All my knowledge has come from pmrgcauk
Gender = Male Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	At only 49 and typically very healthy none of the multiple doctors I was sent to could figure out the severe pain but refused a PMR diagnosis.perseverence and self advocacy and education helped me find a successful treatment.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Don't let your doctor reduced your steroids too quickly.He soon got me down to 7'5mg.I then went into Really bad relapse.I could bare move ,I've never felt so I'll, I am having to start again but reducing Really. Really slowly.20mg to 17'5 one month.17'5 to 15'0 second month.12'5 for following 2 months. 10mg for 1 month.1mg per month till down to 5mg then drop 1\2 mg till hopefully come off steroids..No doubt there will be a few hiccups along the way. Slowly, is better.Don't rush
Gender = Male Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Given oral methotrexate 4 months into treatment. started at 10mg. Weekly. ...went to 25 mg. Weekly over next 3 months. Started injecting 25mg. Methotrexate weekly 8 months into treatment. Started 20mg. Leflunomide daily 11 months into treatment . Currently 15 months in not taking anything. Just started taking 5mg. Prednisone. Not sure if experiencing withdrawl or pmr
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Early acceptance of PMR as a long term condition, will help your overall outlook and probably make progress more smooth. PMR changes as it goes, be prepared to try different coping mechanisms as you go. For example, try taking Pred at night if having sleep issues. PMR sometimes can cycle to where the inflammation is more active, even though you aren't doing anything different. You might need a bit more pred for a few weeks. Try not to get depressed if you have to increase pred again for awhile. Pace yourself. Be kind to yourself. Allow yourself to rest as needed. You may not be able to hold down a job for awhile during PMR. (I needed 1 year off) Especially don't overdo on a day you are feeling good-it doesn't work-you will pay later. Make sure you are stable on one dose before trying to reduce again. Minimum 2-3 weeks at a dose. If you have a flare act quickly to get it under control. I found 2.5 mg extra for a 2-3 days and then quick drop back to previous dose over next 3-4 days worked well. Join an online forum at healthunlocked.com for PMR. Very helpful people who have PMR too. Great to ask and get quick answers to questions. For example, I felt like my legs were buzzing like an electric current-I asked the forum, and got same day replies from several who said they experienced that symptom also. Low Dose Naltrexone may help with depression type issues and pain. It was very helpful for me. Used it about 4 months. Remember, in almost all cases, PMR will burn itself out eventually.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	make sure dr does baseline bloodwork prior to prescribing prednisone, now my rheumy says blood levels clouded by pred, to hard to confirm diagnosis of pmr
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Fatigue and chronic pain can wear you down. PMR is an invisible disability and others won't or can't understand how debilitating it can be because you don't look sick.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have only had it for about 2 1/2 months. I feel very fortunate that my doctor diagnosed it so quickly, but I already feel that I am coming into conflict with him about the proper dosages. My sense is that the dose should have been higher to start with (20 mg. for 3 - 4 wks) instead of trying 20 mg. for only 3 days and then immediately bringing it down to 15 mg., and now lowering it again to 12.5 mg. after only 3 weeks. This is based on the fact that I am still fighting back severe pain & stiffness for 4 hours each morning. However, on the other hand I know the dangers of prednisone and suspect he is trying to go with the lowest effective dosage to avoid side effects. I have had breast cancer and to me this feels worse because it interferes with my life so much more. It was a real emotional rollercoaster for me before I was diagnosed, and though I am relieved I know what it is, I still question the dosage schedule and wish my doctor was more responsive to my input.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have tried so to resist steroids but gave in to the one week trail. I have tried everything and truly nothing but moving most of the day is helpful in the day. If I can get going and keep going I can get though the day but if I sit too much wat hing a movie or lay too long I feel terrible. I hope this goes away soon as after having the steroid for the one week15 mg I have had a bad rebound of pain. I feel like the use of pregnizone my have lenthing my course of the prognosis. Stay positive and keep moving!!!!do not feel sorry for yourself
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	After the initial adjustment I have been encouraged by my GP to aggressively reduce my prednisone intake which I have been doing at the rate of 1mg per month. Although experiencing pain and stiffness during this weaning process I am able to participate in most activities I previously enjoyed pre - PMR
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = No	Be persistent if under 50; i was already in chronic pain which aged me. I'm still fighting with my doctor but I know it's PMR. Symptoms match 100%. I just woke up with both shoulders swollen and red and painful. worse in the AM. NSAIDS don't touch the pain, AT ALL. Prednisone worked within hours.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	GCA only. Probably restricted to head. Took a course of doxycycline 2 years ago for suspected tick bite ( no Lyme disease)...IBS seemed to develop quite quickly after. Wondering whether there is a connection between IBS and GCA/ autoimmune diseases.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Don't get stalked. Don't be a female and expect to be listened to by doctors in the UK's NHS ('it's all in the mind' is the most favoured dx of most doctors). Don't get PMR in the UK Don't rely on healthcare and public services in the UK DO get excellent private healthcare when you're young and healthy so it's there immediately you need it. Plus, IMO, it's the sheer failure of NHS that has led to my condition being neglected for years with the result that now it's far far worse than it should have been. There is no such thing as 'stitch in time' thinking in the NHS. Everything has to get to a crisis before many px get proper dx and tx.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	Avoidance of stress and learning to pace oneself seem to me to be crucial in this illness - which for me has meant clear acceptance that my life has changed significantly and the illness has to be accommodated. Battling against it, and following gung-ho recommendations for quick reductions in medication only hinder. Above all, the need to listen to one's body - it will tell you when you have done too much activity or reduced the medication too far.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Don't let doctors rush you off steriods. There's far more to fear from the inflammation than there is from the pred. Pred controls the inflammation but does not cure the disease, which will come and go as it pleases. Prevent the damage by taking the dose that keeps you comfortable and moving. Reduce s-l-o-w-l-y. Look to the UK PMRGCA group for info on the "Dead Slow Nealry Stop" method of reducing pred. The fewer flares you induce by reducing pred quickly, the more likely and the sooner you go into remission, and the less total pred you'll take at level that produce the long-lasting side effects.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Tapering must be taken slowly. Cut out sugar and salt completely
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = Yes	GET TO A DOCTOR BEFORE YOU LOSE YOUR EYESIGHT
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Taper the steroids more slowly and don't be rushed by gp. go.by symptoms not labs
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	GP lack of knowledge regarding symptoms
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Get as much knowledge as you can. Be prepared for misdiagnosis, doctors who will tell you two contradictory things in the same sentence and missing / incorrect records. Try to keep records of your illness, you may well find that notes of your consultation bear little relevance to the appointment that you attended. Read the PMRGCAuk website and Kate Gilbert's book and any other information you can find. Rest when you need to and pace yourself, it is not a sign of weakness. Stop expecting more from yourself than you would from others. You have a serious illness but it isn't going to kill you so you may as well have the best quality of life that you can while you're waiting for the disease to go into remission, if it does
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Shop around for a Rheumatologist who understands PMR/GCA
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Accept that you have to take things a bit easier and that you're stuck with the steroids,ignoring it will only add to the aces and fatigue. Make the most of the good days.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Unable to correctly indicate my GP dosages on this form so here it is. Initially started on 20 mg for 5 day. Then 15 mg for 5 days which I increased to 17.5 myself. After 5 days went back to his recommendation of 15 but still constant morning pain particularly. After 5 days on 15 dropped to 10 mg. big mistake. Have now increased to 15 mg and will try the Dead slow approach. What I have learned from this experience that whatever the GP recommends should be used as a guideline and one should listen to ones body. the forum has helped me tremendously as I don't believe I would have been brave enough to up the dosage off my own bat without looking at the experiences of others.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I believe physical stress ( surgeries ) triggered Pmr. Emotional Stress contributed to severity of disorder. As stress relieved, i have begun to heal. I estimate my pmr has extinguished 70%, and may be nearing end. I can feel the difference, I have more stamina, better overall mood, less break through pain, and higher tolerance for emotional stress (eg, recent death of son did not knock me off track, no flare).
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Shocked to be diagnosed but decided stress had a lot to do with getting PMR. Decided I was important and have made sure that stress and stressful people can take a back step. Will not take anyone else's problems on board I need to get better. Not selfish just looking after me for a change. Amazing how people and family have rallied after I made that statement Lovey family
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I also suffer with lymphoedema (legs)
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	If having surgery make sure the surgeon fully aware of need for iv hydrocortisone as I didn't have any following TKR last year and had flares immediately after, which meant going up to higher dose of prednisolone and taking a long time reducing. Also, I have had PMR since diagnosis May 2010, and realise that PMR can continue longer than the 2 years doctors tell you! Lastly, pace yourself and be kind to yourself x
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	symptoms of poly were slower to be apparent, but right now I am in a heavy malaise and exhaustion period. The lack of more than 6 hours sleep each night is troubling. I do take naps as can. I dislike immensely the spinniness and the pinching of the eyes (swollen face) from prednisone. Hard to carry on life and as you say others do not know what I am seeing/feeling on my side of the eye. Outwardly I can look 'normal' even when I am not.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Although I was in pain and had reduced mobility through stiffness, I would NEVER have started steroids had I known that after a year I am bloated, unable to recognise myself and really miserable. I would have tried to kick my way through it. Hopefully in another 12 months I’ll be steroid free, and back to normal.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	4 weeks before PMR I had caught treted whith Clacid
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Investigations:- colonoscopy for pain in buttocks Stress test for breathlessness and fatigue whilst walking, followed by Physio to improve cardio-vascular function. Related treatments:- lens replacements both eyes for cateracts - laser treatment to both eyes after 1year. Diagnosis of carpal tunnel in both wrists, Surgical treatment of right wrist very successful. Pain in Left dissappeared with prednisolone treatment but re-emerged visciously at 2mg dose in current flair. Awaiting surgery. 7mg dose of Prednisolone controls night pain but not numbness during day. 4mg dose prescribed left me in severe pain during the night.
Gender = Unanswered Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Horrible, horrible diseases... NHS needs to get better about diagnosing and treating. I am seeing a Rheumatologist privately as I was told I'd have to wait 12-16 weeks to see NHS Rheumy. GP did not have a clue as to how to treat.. she sent me to A&E. Every time I see her she has to look things up on Dr Google! She is lovely and empathetic, but does not know a lot about diseases. I had PMR symptoms for years.. I went to the GP frequently because I KNEW something was wrong. He shrugged each an every symptom off as an ache, pain, complaint associated with a "women of my age." When he did order a test it was done in isolation and usually came back in a normal range... he never connected the dots. Never looked holistically at all symptoms. If he had diagnosed PMR perhaps I never would have gotten GCA. Now I am suffering with both.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Very sad and feel helpless. Can no longer walk with my dog
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Very sad and feel helpless. Can no longer walk with my dog
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Diet. From day one I ate anti-inflammatory foods and have lost 20 lbs. I have no cravings and intend to lose 5 more pounds to be my fittest. My CRP and sed rates fell from extremely high rates to amazingly low within the lowest range in the first month and I have begin to taper from 15 mg of Prednisone to 12.5 without issue so far. I also have started taking the supplements advised by a nutritionist. Rest and pace. I listen for signs of fatigue, thirst and hunger.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Just feel very isolated here in Devon, England. Do not get regular CRP tests & no support whatsoever. Just left to basically get on with it, lowering & higheri g your Pred dosage.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	It would be helpfull to be able to get small dosage prednisolon, to facilitate gradual reductions. In the Netherlands they only have 5 mg tabs. Ordered 1 mg tabs from Activis in GB. Came out in hives all over. When diagnosed with PMR ,it is importand to pace one self and not over-do things on a good day, as one gets punished for that the next day. I stopped my flu shots since diagnosis. Drink a lemonjuice with warm water every morning. Seems to have protected me from colds and the flu. Keep walking if you can.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have suffered extreme stress at points in my life, starting with the death of my 6 year old son 22 years ago, then a bad marriage with man who was emotionally abusive having affairs with my friends etc and then my beloved father diagnosed with Parkinson's. I also have a stressful job.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	In my experience, as a previously fit, strong and active relatively young male (age 60), the psychological impact of PMR has been as significant as it has physiologically. Frequent, extreme mental and physical fatigue have probably been the most wearing symptoms of PMR for me.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Tapering is really hard on me. I can’t stay asleep. I feel awful for the first couple of hours that I am up. Anxiety is high.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Tapering is really hard on me. I can’t stay asleep. I feel awful for the first couple of hours that I am up. Anxiety is high.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	The sleep disturbance is almost the worst symptom/side effect. I was always a poor sleeper but now very often awake til 5 or 6 am and sometimes do not sleep at all. This has made it impossible to make any plans, to travel any distance, and I have had to give up most of my social activities. Even if I do get a full nights sleep, I still have to nap in the afternoon.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	I live in the U.S. Doctors don't seem to know much about PMR at all. They especially are not acquainted with or relay information to patients about different methofds of tapering. I believe that each patient knows their own body best and they need to find the best of tapering for them. However, they need to be told by the doctors the different methods of tapering. I didn't know any of this until I joined a web-site and heard accounts both good and bad from women all over the world. The best thing that ever happened to me. I think ALL DOCTORS SHOULD RECOMMEND THIS WEB-SITE (THERE MAY BE OTHERS) TO THEIR PATIENTS SUFFERING FROM pmr
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	In my immediate circle of friends, there are 7 people I know with GCA/PMR. Four of us have undergone chemotherapy.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	In my immediate circle of friends, there are 7 people I know with GCA/PMR. Four of us have undergone chemotherapy.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	At 2yrs of age I was thought to have epilepsy and was put on phenobarbital but when I was 16 a specialist said I had vaso vagal disorder and took me off phenobarbital. I still had episodes of passing out on occasion at it wasn’t until I was 47 that I was found to have neurocardiogenic syncope and given a pacemaker. Since having the pacemaker have not had one single episode! At about 40 I found out I have Raynaud’s disease. At 57 I was found to have PMRGCA. Born in New York state in 1956 now living in Washington state at currently 61yrs I think I feel stable enough with my medical issues and treatments to function well. I am still holding down my stressfull full-time job that provides me with affordable health care.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Just to say that my ESR was over 100 and CRP over 300 at diagnoses.Pain and stiffness became quickly more severe over the week leading up to diagnosed.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	It seems to me doctor's, at least mine, do not listen. I have never been so frustrated in my life dealing with the medical system. I have been a caregiver for over 20 years and have always been the person taking my clients (elderly) to their physicians and have always had a great rapport with all of them. I think the doctor's are still at a loss as to how to treat PMR/GCA. I do hope it gets better but in the meantime I am going to have to change physicians as she tends not to listen. Thank you
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Finding the PMRGCAUK forum on the Health Unlocked website fundamentally changed my experience of this illness for the better
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I have had inflammatory arthritis for 23 years. My ESR is usually between 30 and 40. When my PMR suddenly started it shot up to 60 and went even higher later when I started GCA. I have taken many medications through the years but my arthritis has been stable with Leflunomide and Etanercept for about 8 years. Taking Predisnolone has improved my arthritis symptoms.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Last week, with my Pred dose down to 9 mg/ day, my Aviation Medical Examiner (I am a retired airline pilot but I still want to fly) said I could have a go at doing my Class 2 Aviation Medical to start the process of regaining my licence. NZ Civil Aviation Authority had promptly 'grounded' me on 7 September 2017 on hearing of my PMR diagnosis. My Pred has still got to come down a bit more: 'each case will be assessed on its merits'. Problems found on my medical: Problem #1: my weight had gone up 4 kgs !! Problem #2: high blood pressure. I have now cut out coffee, wine (I used to have one glass / day) and bread. I have re-joined my local gym. So hopefully I will still get my Aviation Medical Certificate back but it will take more time... Tell people they should insist on getting their GP's to check blood pressure at the fortnightly blood checks. I could have caught these two problems earlier had I insisted on my GP monitoring my weight and blood pressure. Re Q.8: I note you record CRP in mg/dL. In New Zealand, we record it in mg/L. So my tick in the 'over 10' box - with my CRP reading of 36 mg/L - will skew the results: please correct as appropriate.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	CBD (marijuana) works great for the pain, pretty much the only thing that got me through it-- and helped me SLEEP, too! I am so thankful I'm feeling so much better, almost as if I'm on a natural high, from the Prednisone. I have more energy now, doing social things again, and the depression is gone. The only thing is-- because Pred is the Devil Drug-- I have to be VERY DILIGENT in keeping up with my exercises (especially weight training to keep bones strong), eating right, and taking all my supplements. Also, even though I feel better, I am continuing with the acupuncture appts. (down to once every 3 weeks now) and the Chinese herbs, as I really believe this is what is helping the night sweating problem.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Really got to pace everything.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I began to split my dose after 6/7 months from diagnosis taking third at night and remainder in the morning. This eased the overnight pain/discomfort but did increase nighttime sweats, increased heartbeat sometimes which probably caused some restless nights sleep. I still split my dose and my GP is supportive if it works. I haven’t completed the prednisolone schedule I followed as I cannot remember the details apart from following the DSNS method I discovered on the Health Unlocked PMR page. After first flare which really depressed me as hadn’t been warned about it a slow taper worked for me. I seem to be very sensitive to my steroid dose hence the slow taper. Understanding how your body responds is so important and it takes a long time to work it out together with a lot of patience and support from Health Unlocked - invaluable.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Developed benign ectopic heart bests when had PMR before diagnosis of PMR. Also, pre prednisone, was experiencing sharp expirations of sir.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	One episode of unequal pupils - fully investigated at the time - brain CT and MRI - unremarkable, no cause found. Both normal now. Severe Stomach bloating with acid inhibitors then decreasing excessive salivation on ceasing the medication.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	tapering and flare histrory is complicated and i have inadequate records.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	GCA goes into remission. There is no cure like doctors think. PMR inflammations goes down at each persons own rate, So tapering doses should be scheduled individually.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Unfortunately, you probably must fight With your rheumatologist about proper dosage, as they DO NOT FEEL YOUR PAIN!
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Unanswered	Always manage your own tapering of prednisolone because you know your body and it doesn't take kindly to a quick reduction.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I did find that I had a doctor who knew very little about PMR who tended to give me incorrect information on reducing and had no other information eg diet, exercise...
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	the magic of steroids when 1st taking was amazing, to be able to move my arms and legs again, i just woke up one morning not able to even lift the covers off me i called my husband to help me, pain was un believable, not able to move my legs either.i felt so disabled. the only down side threw all this are the side effects im sad to say. i can not sleep, il have 2 hrs sleep say at 12pm. then bang wide awake for 3 hrs or more. hopefully it will correct its self..
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	A slow tapering of Prednisolone is essential to avoid flares and withdrawral. Rheumatologists often seem to want to rush us off prednisolone.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I have been fortunate in having an awareness of Pmr due to my mother being diagnosed some years ago. I presented at my GP with a self diagnosis. He quickly referred me to a consultant physician who prescribed prednisone. Pain gone within hours but the pred side affects were debilitating. I researched and read anything and everything I could find. Due to gaining knowledge, I requested all the recommended tests eg. eyes, bones etc. I also looked at diet and changes to assist my body to adjust to pmr and prednisone. My journey has been one of proactively taking control and my GP has supported my requests. If I do not request I do not get. My GP has a great knowledge of pmr and being prescribed pred was a no brainer. Perhaps living in Australia our medical system and insurance benefits those who contract little known diseases? Research and proactively ‘own’ your illness.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	From the onset I cut out all carbohydrates except brown bread and rice so did not put on weight. I always walked every day even though not very far. As I had no monitoring from my GP the upside was that I tapered very gradually (not according to my prescription) and am now on zero prednisolone for a week so far
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	2 years duration is mentioned often this is misleading and demoralising advice.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	It would be very helpful if there were leaflets/booklets on this condition. There is very little information available, none of my family or friends had heard of it. I feel it should be a recognised disability as can cause financial hardship when one has to unwillingly give up work.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	The information gaind from the PMRGCAuk forum on healthunlocked greatly helped me to change my taper from a 4 week 1mg to a much more controlled and usable one.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I’ve had repeated trouble getting doctors to treat my PMR, despite having a fairly typical presentation. My GP didn’t even know what it was, resulting in two relapses after short courses of prednisone. My rheumatologist found all my relapsing symptoms to be due to osteoarthritis despite me never having that before. He forced me to 2 mg prednisone within 10 months of treatment resulting in a long painful relapse that lasted many months before I just stopped seeing him and got care from another doctor. My current doctor is always trying to get me to reduce my prednisone, but tolerates (barely) me not reducing below 5 mg. Currently I’m having PMR symptoms worsening on 5 mg prednisone, and I’m resisting increasing, but I know I’ll have to go up a couple mg. I think all my relapses have made me much sicker than I would have been if I had not rushed to reduce dose despite returning symptoms. Also, I have prednisone side effects at much lower doses than I had earlier in my disease.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Lower back pain around 3 rd vertebrae returned when reducing from 20 to 15 and 12.5 mg predniselone. Stayed on 12.5 longer than planned and back pain eased off
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	First episode I’m certain was triggered by shingles vaccine; second one I suspect exposure to herbicide.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Mother had Lupus Daughter,sister and niece all have under active thyroid In my 40s had recurring sciatica, Achilles tendonitus and tennis elbow
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I was relatively pain and symptom free whilst tapering until about 5mg/day. At that level I could feel the stiffness returning and the rib pain increasing. Now down to 2mg/day at the GP's request and stiffness is uncomfortable most of the day with constant rib pain. However, I can still cope with life and am still able to work, sometimes quite physical work.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	Mother and father had hypothyroidism Grandson is type 1 diabetic.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	In March of 2016, I had an episode which might have been GCA. I normally do not have headaches. On this occasion I had a terrible headache with throbbing just above my right ear. This was on a weekend and I was afraid of GCA, so I sought assistance from a locum doctor service. On the locum's advice I took 25mg prednisolone Sunday evening and again Monday morning, I also took codine + paracetamol tablets he prescribed. On Monday morning (after taking prednisolone) I had a blood test which showed normal ESR and CRP. The headache decreased substantially but I had some jaw discomfort and other hints of GCA over the next few days. I have not had any further GCA-like episodes (fortunately). But should one occur, I am prepared to take large (say 40mg) doses of prednisolone while getting emergency help.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I think you need to keep pushing yourself although everyone tells me to take it easy. I keep working and running (slowly) and I think this keeps me stronger than at first when I did very little.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	When I was finally diagnosed, the GP said "but you are not 70". I am sure that these things do not have calendars. I found out about grandad after my diagnosis. I have lifelong asthma so always autoimmune.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	My first GP was clueless, insisted it was a sports injury. I said I've played sport all life, it isn't. So GPs perhaps need educating. Fortunately second GP checked my hips, found them ok and came up with correct call.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I feel that stress brought on my condition.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Recently developed swollen knuckles - not sure if related
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I seem to be very sensitive to small changes in dose of prednisolone. I feel fine on prednisolone 15mg/day but have relapsed a few days after reducing to 14mg. I have developed shoulder pain in last couple of relapses. I did not have this originally. My mother and sister had small joint rheumatoid arthritis. My Rh factor is negative
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Information from GP on diagnosis was over optimistic and very inadequate - assumes I would look it up on internet! Rheumatologist just wants to push more medication on me until I said “No”. Feel under constant pressure to reduce steroids Felt very alone until found PMRGCAUK forum which is where I get my information and support. Currently feeling better than I have for months with all round reduced (not absent) symptoms as long as I get enough rest.
Gender = Female Age When Symptoms Started = Under 50 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Live in a part of the country where you have access to a GP.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I think I have suffered very little from PMR over the past 15 months since being diagnosed and prescribed Prednisolone. My main concern is to reduce my dose because of being osteoporotic, but other than that my life has more or less continued as before, although I find my limbs ache or are very stiff at various times, particularly if sitting in one position for a while.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	This is a voyage of uncertainty, a new drug regime Tocilizumab offers better results, I am uncertain as to how long the condition will last, how hard I should exercise and how full my recovery will be.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	PMR was diagnosed secondary to GCA. The relatively high doses I have had for the GCA have kept it at bay mostly.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Fortunately recognised by GP , but after initial diagnosis left to manage medication on ones own to quite an extent
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Started with hips and shoulders aching, then the head symptoms as it very swiftly turned into GCA over 2 months. Have spoken to other women who lost their vision in the same way- the scalp tenderness is exactly the same - a gust of wind on the hair will hurt but patting the head/scalp will not. The feeling rotates all over the head. The double vision and blurred vision was the same too, also the nighttime headaches -waking from sleep because of the intensity and as I told the doctor's at the time - I am not a headachy person. Ears felt like hot needles were being pushed in. Could not push tongue out and chewing hurt. Blood tests were all normal during this period (26). Once stroke was ruled out I was sent home then eyesight had a veil of white coming up from below and I went to the opticians who immediately diagnosed correctly. Then ESR was 65. Left eye went - oral dose of 60mg Pred did not stop second eye from going. I am fit and active. Had the Shingles vaccine aged 70 - this happened age 74. Have been taking asprin, statins and betablockers for 7 years.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Taper was too fast several times. Methotextrate side effects resulted in discontinuance. Prednisone led to osteoporosis in 1 and a half years. Now dealing with 7 vertebral fractures.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I have had a dreadful time over the last 9 years. It took over a year to get a diagnosis during which time I was written off as being stressed and depressed, which I wasn't. I spent a fortune on physiotherapy which made things worse, neither of the physios picked up PMR either. I think I was told to get off steroids too soon and too quickly and that's why i still have it. When I went to see a rheumatologist after 3 years I was told I couldn't possibly have PMR because I was too young! they forced me to go on methotrexate which had horrible side effects and I had to stop and go back on Pred. I now have a great rheumie, Dr Mackie a world authority on PMR. Getting on to steroid injections has been a game-changer for me, I don't know why there is so little information about them or why I was never offered them before, I had to do all my own research and push for them. Much less side effects than oral Pred. I have had adrenal problems on 2 occasions, which I had to self-diagnose with help from the amazing PMR experts on Healthunlocked. If it hadn't have been for them I could have died. No doctor gave ever gave me info on adrenal recovery. Once when tapering below 5 Pred in 2017 and the 2nd when I wasn't being given the steroid injections frequently enough last year - my rheumie at the time insisted i could only have them every 3 months but you should have them every 2-4 weeks. I was forced to give up work at the age of 57, I was self-employed and just couldn't go on any more. It is no exaggeration to say PMR has devastated my life so now I volunteer with PMRGCAuk to help others
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	From being healthy until new year 20 life became difficult. Flu man version, uti and pmr within 3 months.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	In addition to PMR, I have been diagnosed with Microscopic Collagenous Colitis. I will probably maintain my 5 mg prednisone qd to keep this under control. When I tried decreasing below 5 mg, I started having problems.
Gender = Male Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Slowly tapering and have some hand stiffness
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	I am very fortunate so far. I have not experienced many side effects and I am feeling a lot better and am mostly able to live a normal life.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	My biggest question is where or why did I get PMR? I have been an extremely healthy, active and athletic person my whole Life. Did the total knee replacement surgery put my body into stress or Is the new implant/device the reason for this auto immune response? Also, in this time of Covid 19, could I have had a virus before going into Surgery. My surgery was on 3/17/2020 just prior to the Covid shutdown. No Covid testing was done before the surgery.
Gender = Female Age When Symptoms Started = 50 to 54 Diagnosed with Giant Cell/Temporal Arteritis = No	GP dismissed PMR , paid privately one week later , positive diagnosis with PMR , had typical symptoms but age at 52 against all odds of PMR apparently until went to a specialist
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Adrenal symptoms at 4.75 mgm Flare after hip replacement, increased from 5mgm to 10mgm, reduced 9,8,7,6, daily until back to 5, flare resolved
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	It seems that there are varying levels of PMR. For some it is life-changing and debilitating, for others, like myself, it is a relatively minor inconvenience with some annoying side effects such as thin skin and hair loss. My life has barely changed and I do everything I did before PMR, but at a lower level for strenuous activities.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	I find it frustrating that I have brain fog, and forgetting things, even when reading, missing parts in the text. I was always on top of things. I have ordered goods on the internet and when I have paid for item, I find I have ordered two instead of one, I am not. Checking things properly, I done a text to my son and sent it to my daughter. I find I get tired in the daytime more often so when carrying out gardening I have to rest more often.
Gender = Unanswered Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Have recently had a full hip replacement surgeon commented on how hard my bone was to cut through, had 2 dental implants earlier this year, bone density was very good. I believe the Glucosamine and Chondroitin which I have taken regularly for about 19 years along with active walking and golf have had big influence in bone density.
Gender = Unanswered Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	I tried changing to morning dose, taking meds an hour later each day but for me, taking it with my evening meal gives me the best quality of life.
Gender = Male Age When Symptoms Started = 80 or over Diagnosed with Giant Cell/Temporal Arteritis = No	In view of my advanced age and with my GP's agreement, I have decided to take 10mg Pred to preserve some quality of life. I will not attempt another taper for at least a year. I have already had two cataract removals and my bone density, though not checked recently, is very good. (I have had four bad falls in the last year, but no broken bones). I can manage a very short time pottering in the garden but soon become exhausted so I rest frequently throughout the day. Sleep is fitful and I visit the loo two or three times (I am fecally incontinent following colon cancer surgery). Mentally I am resigned to life in the slow lane but am not depressed. I occupy myself at the computer, processing the many thousands of photographs I and my late wife took on our extensive travels. I am writing my life story for the grandchildren. Due to Coivd 19, I have not seen as much of my family as I used to, but they have all been very concerned and extremely supportive by email, phone and Zoom.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	The fatigue can be profound. Suddenly have zero energy. I never go out...no energy for that. I conserve my energy for a demanding online job.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I was investigated for GCA during the latest flare. I had several symptoms. It took so long to get the ultrasound I had been on 30 mg for 2 months. I still wonder if I have it. I had a severe skin reaction to Alendronic Acid and as my DEXA is normal I am reluctant to take other biophosphates but my rheumatologist spends most of my visits trying to persuade me leaving little time for anything else. Trying to figure out what is osteoarthritis and PMR is very difficult. Finding a good pain clinic and having steroid injections under X-ray has been very helpful. The first time I was diagnosed I was so happy to feel better. I did not mind the moon face and other side effects. I just enjoyed my life and had holidays and good times. The last flare has been very hard, the fatigue was horrendous. I am reducing very slowly and will not be persuaded by my rheumatologist to speed up. I wish I had known this earlier. I think I could have avoided the flare. I now know how emotional stress is very likely to cause a flare. I know to pace myself. I struggle with guilt because I feel I am not the woman my husband married, and I am unable to be the grandmother I envisioned. I wish I had found the support group PMRGCAUK sooner. They are more helpful than my rheumatologist. My GP is wonderful, very supportive.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	I have found the PMRCGAUK site extremely helpful and supportive. Their wealth of knowledge about the symptoms of PMR and their good advice has been invaluable because I find my rheumatologist very unapproachable. He just wants me to get off the steroids as quickly as possible without any understanding of the discomfort when you are tapering down the dosage. I also have been diagnosed with osteoporosis (before PMR) and this has definitely deteriorated during the last few years too but he ignores that. Just says have physio.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Joining PMRGCAuk and reading the online forum has taught me a great deal about PMR and GCA and is helping me to manage my own condition. I have a sympathetic GP who allows me to taper Prednisolone at my own rate and does not insist that I stick to the usual formula of 1mg per month.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Don't be afraid of steroids! Without them you'll be a virtual invalid. I was. The side effects will diminish as the doses are reduced. Look after your skin. Moisturise like mad. Keep active once pain free. Don't over eat. Remember, whe looking at you fat face in the mirror, that it will go back to normal when you get below 10 mgs. If you get facial hair, and boy! I did. Shave it off and tell yourself that it won't last forever. Nightmares? It's amazing what your mind will get up to, but remember, they're dreams, not real, and they'll stop when you reduce to the lower doses.
Gender = Female Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	I developedPMR after falling and breaking my wrist. I had surgery to put a plate in my wrist. I fell due to a bad boutof trochanteric bursitis in my hip. I also have an underactive thyroid and take 100 mc of thyroxine daily [reduced from 150mc when I was younger). I believe the PMR wasthe result of the trauma of my fall and stress. I had surgery for cataracts in both eyes before the PMR. I also have normal tension Glaucoma diagnosed pre PMR. I feel that thePMR has aged me 20 yrs. l hate feeling so useless due to the awful fatigue.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Difficulty in tapering below 3mg of prednisolone. A quick relief of pain since stating prednisolone.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	Because of developing Macular Degeneration, my rheumatologist changed my medication to Hydroxychloroquine (placquinol) which I take with Folic Acid. I was successful in eliminating Prednisone within 5 weeks at 1mg per 5-6 days. I have the same morning stiffness of PMR, which goes away within an hour. I take Hydroxychloroquine 200mg twice a day. 5-6 am and 5-6 pm.. Methotrexate once weekly.
Gender = Male Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Sign up to the excellent ‘Health Unlocked’ PMR / GCA online blog: https://healthunlocked.com/pmrgcauk . Start by reading the ‘pinned posts’ - it’s on the right side of the screen. Then click on the blue ‘See All’ button. I read the posts almost daily; a lot of them one can skip over fairly quickly but there’s often some great material there. It’s certainly reassuring to know we are not alone with this horrible disease. Some of the contributors - such as PMR Pro and Dorset Lady - are obviously health professionals and I always make a point of reading their posts. There’s a really excellent book on PMR & GCA by Kate Gilbert that I recommend to my friends with PMR or GCA; it’s very helpful. I bought a hard copy from Amazon but it’s available as an electronic book if you are into ‘Kindle’. I see there’s a second edition out now.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	read a lot join a charity find a medical ally more than anything, read the spoon theory thank you to anyone reading this, thank you for undertaking this survey and for inputting the data and cleaning it and analysing it. so nice to know this hideous time has been useful!!
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	In my 5th year of PMR/GCA unable to reduce Prednisone dose below 12mg without a flare. No access to other drugs in Australia such as TCZ - don't fit criteria as not diagnosed originally with a temporal artery biopsy ! regardless of ongoing symptoms. Methotrexate 10mg is all else I can do and that is the max dosage I can tolerate.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	The stiffness is unbearably painful, but only when you try to move, so sitting in a chair or lying in bed were not a problem until I tried to move. You also feel totally fatigued and lacking in energy. First thing in the morning it took a few minutes to be able to bend my knees, back and hips inch by inch using my arms to help. I felt like I was turning to stone from the waist down. I now know that such stiffness should be investigated as PMR with a blood test and a trial of steroids as the symptoms are relieved quickly if it is PMR, whereas paracetamol does not work. Pester your GP and don't be fobbed off or it may develop into GCA as mine did.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	It is now 12 months since the onset of PMR and 10 months since diagnosis. I am being treated by my GP. I am following a slow taper plan for Pred, now reducing by ½mg every 5 weeks and this has so far proved successful with no flares. Fatigue is my biggest problem. It is variable with some days better than others. I am in UK. I have an IgG immune deficiency (treated by weekly infusions of Hizentra). Thus I am classed as extremely vulnerable to Covid-19 and so I have received a third primary vaccination followed three months later by a booster.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Recognise that this is a serious systemic disease earlier if you can and begin to pace yourself early. Join the Healthunlocked PMR charity website to gain more information about your condition. Most importantly listen to your body.
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I have a feeling I am at the END of PMR> hoping!!! lowering my prednisone gradually now. I am now at 1.5 and feeling fine! I still get tired, but then I am nearly 76 years old and have trouble differentiating old age and PMR. In the great scheme of things. THIS is not the worst that can happen. I have been VERY lucky. I stayed with my GP and did not see a Rheumatologist. and I read a lot on Healthunlocked. com which is a GREAT site for information. I should EAT better. I eat too much sugar. but such is life. !!
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I was very lucky that a Nurse Practitioner diagnosed me with PMR after only 6 weeks of pain and stiffness. I started on Predisnone and felt instantly better. No pain /stiffness and my mood lifted considerably. I have had a relatively easy journey and have taken reductions in steroids slowly with little side effects. I have a lovely doctor who rings me up regularly to check on how I’m doing, and this support has been a comfort and very reassuring.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	Starting dose of 15mg prednisolone eliminated all my PMR symptoms and I have not had any symptoms so far while I am tapering. Prior to treatment with steroid I had problems in lifting objects, dressing, reaching, getting out of car, bending during 6 months prior to diagnosis. The severe initial symptoms were much improved with ibuprofen and subsequently naproxen before the start of steroid treatment.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Joining the HealthUnlocked charity and forum for sound advice and support on all aspects of managing the condition
Gender = Female Age When Symptoms Started = 70 to 74 Diagnosed with Giant Cell/Temporal Arteritis = No	I was very lucky that a Nurse Practitioner diagnosed me with PMR after only 6 weeks of pain and stiffness. I started on Predisnone and felt instantly better. No pain /stiffness and my mood lifted considerably. I have had a relatively easy journey and have taken reductions in steroids slowly with little side effects. I have a lovely doctor who rings me up regularly to check on how I’m doing, and this support has been a comfort and very reassuring.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I diagnosed myself a long time before the GP; I suggested it to her and she did the blood tests when physio and massage didn't help. I would recommend using the Health Unlocked PMR online forum which is brilliant and so helpful.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Be careful of overdoing things in the early stages when steroids are masking the pain and stiffness of inflammation - you will hurt yourself. Eat a low carb diet. Do not think that PMR will be over in one to two years - the median average is over 5 years. Early remission is possible only for a few. Do not rush to get off steroids - you will only flare.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I am certain my PMR was triggered by the Covid vaccine. You need to have control of your own medication as I suffered two flares through tapering too quickly. Tapering gets harder for me as the dose reduces and can result in tiredness, irritability, depression and feeling emotional for 1-2 weeks. I joined the PMR/GCA UK forum which has a wealth of information and offers great support to sufferers and this has been much more useful than my GP surgery which is purely for prescriptions.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Have following joining the PMR forum and the advice therein, am now using a slower reduction programme with longer intervals between each reduction. I have had about 8 relapses in just under 4 years. The information I have entered in the previous sections is incomplete and because I don’t remember all the information requested much of it is to be honest a bit of a guess.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	For first 2 years I struggled on my own with what I thought was flu that wouldn't go away. Very gradually I noticed improvements. A 'back to square one' relapse after 2 years and 2 months made me visit my Dr. After another 4 months and some tests, I was given steroids to take. They controlled the pain very quickly, but caused other problems for me with the side effects I had. My reducing of steroids does not fit a monthly chart. I had no steroids for 2.5 years. When started on 40mg I was asked to reduce by 5mg per week until I got to 10mg, then reduce 1mg per month. Any return of pmr pain = go back to previous step. I had problems reducing from 15mg to 10mg, so started my 1mg per month reduction from 15mg. I 'got stuck' on 10mg for a few months, also 7mg. I have been trying to reduce from 5mg for approx the last year. I have recently reduced by a half mg instead of a full mg and this seems to be working. I will leave it for 2 months before I reduce by my next half mg.
Gender = Male Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Never had any illness like this before. Experienced injuries due to sports. Very active person. Sport and activity on a regular basis. The symptoms started about 10 days after my second Covid Jab. I knew after two weeks that this was a new illness. I was able to push for a diagnosis fsirly quickly with a responsive GP and advice/referral from a chiropractor who I saw very early on. PMR diagnosed/confirmed by blood tests within about 6 weeks. Slight delay due to initially treating as a muscle shoulder injury
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Weight gain-Better with lower doses. Osteoporosis-now Osteopenia. Breathlessness is better with lower doses. Fatigue fluctuates but when I do have energy, it is depleted rather quickly. Hair Loss-Hair has grown back & curly but dry due to Prednisone. Possible it wasn't Prednisone that caused hair loss but Onset of PMR or Stress. Increased Urination-Better with lower doses. Insomnia-Fluctuates but less frequent. Slow wound healing-had biopsy about a year ago & still see pink mark/slight bump. Decreased appetite-Actually not very hungry, nothing sounds good frequently. Don't feel like cooking, mostly dinner time. 4 Relapses in the 2 years of treatment. I feel they happened due to: too quickly reducing 2x, COVID Vaccine 2X. Also, taking dose at night helps with morning pain & stiffness. Try to take as late as possible, 11/12. Trying to stay awake for dose results in being tired, so I can sleep most of the night.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	Weight gain-Better with lower doses. Osteoporosis-now Osteopenia. Breathlessness is better with lower doses. Fatigue fluctuates but when I do have energy, it is depleted rather quickly. Hair Loss-Hair has grown back & curly but dry due to Prednisone. Possible it wasn't Prednisone that caused hair loss but Onset of PMR or Stress. Increased Urination-Better with lower doses. Insomnia-Fluctuates but less frequent. Slow wound healing-had biopsy about a year ago & still see pink mark/slight bump. Decreased appetite-Actually not very hungry, nothing sounds good frequently. Don't feel like cooking, mostly dinner time. 4 Relapses in the 2 years of treatment. I feel they happened due to: too quickly reducing 2x, COVID Vaccine 2X. Also, taking dose at night helps with morning pain & stiffness. Try to take as late as possible, 11/12. Trying to stay awake for dose results in being tired, so I can sleep most of the night. Cramping is also an issue.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Know your body.
Gender = Female Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = No	Be careful of overdoing things in the early stages when steroids are masking the pain and stiffness of inflammation - you will hurt yourself. Eat a low carb diet. Do not think that PMR will be over in one to two years - the median average is over 5 years. Early remission is possible only for a few. Do not rush to get off steroids - you will only flare.
Gender = Male Age When Symptoms Started = 75 to 79 Diagnosed with Giant Cell/Temporal Arteritis = No	Not been referred to Rheumatologist, care is provided by GP (as is usual in UK). GP allows me to set my own tapering regime.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = Yes	I would not have known that I had GCA/LVV had I not had PET scan.
Gender = Male Age When Symptoms Started = 55 to 59 Diagnosed with Giant Cell/Temporal Arteritis = Yes	Don't give up. Push at the boundries of what you can do but rest when you can.
Gender = Female Age When Symptoms Started = 60 to 64 Diagnosed with Giant Cell/Temporal Arteritis = No	I find it hard to get drs to view my health holistically. My GP is excellent but the rheumatologist won’t talk about skin rashes even though the biopsy shows an autoimmune condition. My optician was not interested in possible GCA. We need a “one stop shop”.
Gender = Female Age When Symptoms Started = 65 to 69 Diagnosed with Giant Cell/Temporal Arteritis = No	I found theer to be very little information about PMR and if my husband were not with me I could not have continued to carry out the ADL . I would have need a lot of help .I was in bed for about 4 weeks and and just managing short walks at my worst,