OVERVIEW

Thank you for taking the time to participate in this survey. There is a tremendous amount of anecdotal data available regarding PMR, but apparently very little systemic data collection to categorize various aspects of the disease. Almost every article describing PMR says the same thing:

• Little or no incidence below age 50
• More women than men suffer from this disease
• Average age of onset is 70
• Disease is self-limiting lasting anywhere between 1-4 years
• Most common symptoms are bi-lateral shoulder and hip/leg pain
• Successful treatment of symptoms with Prednisone

The purpose of this survey is to collect a standard set of information regarding PMR patients that could be used as a starting point for people who are new to the disease.

The survey is simple and should only take about 15 minutes or less to complete. When all answers are completed, simply click the Submit button at the bottom of the page.

Please be assured that your responses will be completely anonymous.

NOTE:  IF YOU HAVE ALREADY RESPONDED TO THIS SURVEY, PLEASE DO NOT RESPOND AGAIN AS THIS MAY INVALIDATE THE DATA.

If you make an error while filling in the form, go back and change it or simply close the document rather submit the response on more than one occasion. To repeat, only click on the Submit button when you have finished the survey.

SEEING THE RESULTS

When a sufficient number of responses have been received, a variety of reports will be generated from these responses. These reports will be available for anyone to view at the following location:

http://www.quantisurve.com/pmr/reports.htm

REQUESTING RAW SURVEY DATA

In addition to the available on-line reports mentioned above, we will also make available the survey response data in "raw" format, i.e. exactly as entered by the survey responders.

This format will consist of either 1 or 3 csv (comma separated values) files. The reason for the csv is that this is a well known export format that many applications (spreadsheets, databases, etc.) can import. The reason for 3 files is that Microsoft Excel, until quite recently had a limit of 256 columns. The results are exported with one row for each response and one column for each question (each checkbox is a separate question). The survey therefore has 327 separate questions, exceeding Microsoft Excel's limit for most older versions. The results are split up as follows:

1. Main results:  all questions except for taper and family history
2. Taper results
3. Family history results

The first column in each file is a response identifier, which will make it easier to link responses from each of the three files. The second column is the response date. The responses are in the order of when they were submitted. The remaining columns are the actual result values.

If you have the ability to process zip files, the csv file(s) will sent in a single zip file as an email attachment.

Please be aware that we have been receiving occasional multiple responses from the same individual, sometimes separated by weeks or more in time. When we encounter an obvious repeat, we try our best to combine the responses into one response, and delete the others. The implication of this approach is that as the raw data files are produced over time, the data in the latest result files may have different information from previous result files for prior responses that have been updated by a newer response. We believe it is better to combine responses than to simply discard either the earlier or later one.

To request the survey data, click on the link below and fill in the information requested in the body of the email:

1. What is your gender?
   Male     Female    
2. How old were you when the symptoms first started?
   Under 50     50-54     55-59     60-64     65-69     70-74     75-79     80 or over    
3. How old were you when you were diagnosed and treatment started?
   Under 50     50-54     55-59     60-64     65-69     70-74     75-79     80 or over    
4. Who made your diagnosis?
   General Practitioner     Rheumatologist     Orthopedist     Neurologist     Self     Other    
5. In the 2 years prior to developing PMR or GCA, did you (check all that apply):
   complete menopause (women only)?
   take statins for the treatment of high cholesterol?
   have flu-like symptoms?
   experience intense emotional stress/shock?
   stop smoking?
6. What was your weight at diagnosis? (useful for calculation of medication dosage as mg/kg, as opposed to absolute dosage)
   Under 100 lbs     100-125 lbs     126-150 lbs     151-175 lbs     176-200 lbs     Over 200 lbs    
7. What was your Erythrocyte Sedimentation Rate (ESR) in mm/hr at the time of diagnosis?
   20 or less     21-30     31-40     41-60     61-80     Over 80    
8. What was your C Reactive Protein (CRP) Level in mg/dL, if measured, at the time of diagnosis?
   Less than 0.50     0.50-1.00     1.01-2.00     2.01-3.00     3.01-4.00     5.01-7.50     7.51-10.00     Over 10    
9. What was the progression of your symptoms?
   Sudden (e.g. overnight)     Gradual (started in one area and progressed over time to others)    
   Please describe any additional information regarding the progression and history your symptoms in the text box below:
   
   


10. In what areas of your body did you experience pain/stiffness? (check all answers that apply)
    
    

    Location	Pain	Stiffness	Swelling	Early Morning	After Prolonged Inactivity
    Left shoulder/arm
    Right shoulder/arm
    Left elbow/lower arm/hand
    Right elbow/lower arm/hand
    Left hip/thigh
    Right hip/thigh
    Left knee/lower leg/foot
    Right knee/lower leg/foot
    Lower back
    Neck
    Other

    
    If you checked "Other" above, please describe your symptoms in the text box below:
    
    
11. Have you also been diagnosed with Giant Cell/Temporal Arteritis?
    No     Yes    
    If you answered "Yes" above, please describe your symptoms (check all answers that apply):
    Persistent headache
    Unable to look at bright lights or watch TV
    Unable to chew due to pain in jaw
    Whole face ached
    Suffered partial or complete loss of vision due to GCA
    Suffered a stroke either before or after GCA was diagnosed
    Other (please describe):    
12. If you are not in remission, how long have you experienced PMR symptoms?
    Under 6 months     6 months up to a year     1 up to 2 years     2 up to 3 years     3 up to 4 years     Over 4 years    
13. If you are in remission, how long did your bout with PMR last?
    Under 6 months     6 months up to a year     1 up to 2 years     2 up to 3 years     3 up to 4 years     Over 4 years    
14. What was your initial total daily dose of Prednisone/other corticosteroid?
    Under 10 mg     10-15 mg     16-20 mg     21-30 mg     31-40 mg     41-60 mg     Over 60 mg    
15. What was your initial dosage schedule of Prednisone/other corticosteroid?
    AM only     PM only     50% AM, 50% PM     75% AM, 25% PM     25% AM, 75% PM     Other    
16. How effective was your initial dosage and dosage schedule of Prednisone/other corticosteroid in relieving your symptoms?
    The descriptions below for the percent effectiveness are meant to be examples of how to translate your subjective feeling of relief into a numerical figure of merit. If the descriptions do not fit your experience, please feel free to substitute your own assessment of percent effectiveness.
    100% -- complete, 24 hour relief
    90% -- minor morning residual pain/stiffness lasting < 1 hour
    80% -- minor morning residual pain/stiffness lasting 1-2 hours
    70% -- moderate morning residual pain/stiffness lasting < 1 hour
    60% -- moderate morning residual pain/stiffness lasting 1-2 hours
    50% -- moderate morning residual pain/stiffness lasting 2-4 hours
    40% -- moderate morning residual pain/stiffness lasting > 4 hours
    30% -- severe morning residual pain/stiffness lasting 2-4 hours
    20% -- severe morning residual pain/stiffness lasting 4-6 hours
    10% -- severe morning residual pain/stiffness lasting 6-8 hours
    0% -- severe morning residual pain/stiffness that never goes completely away
    
    Please describe any additional information regarding the effectiveness of your initial dosage and dosage schedule of Prednisone/other corticosteroid in the text box below:
    
    
17. Enter your Prednisone/other corticosteroid tapering schedule thus far:
    
    

    Month	Dosage (mg/day)	Month	Dosage (mg/day)	Month	Dosage (mg/day)	Month	Dosage (mg/day)	Month	Dosage (mg/day)
    0		12		24		36		48
    1		13		25		37		49
    2		14		26		38		50
    3		15		27		39		51
    4		16		28		40		52
    5		17		29		41		53
    6		18		30		42		54
    7		19		31		43		55
    8		20		32		44		56
    9		21		33		45		57
    10		22		34		46		58
    11		23		35		47		59



18. If you suffered any relapses in your condition, fill out the information for each relapse in the text boxes below:
    
    

    How long into your illness did this occur?	Prednisone dose (mg/day) taken at that time	Prednisone dose (mg/day) needed to relieve your symptoms after relapse



19. What side effects have you experienced from taking Prednisone/other corticosteroid for your PMR? (check all answers that apply)
    Weight gain
    Osteoporosis/bone loss
    Fractures
    Acne
    Breathlessness
    Buffalo hump
    Cataracts
    Change in fat distribution
    Diabetes
    Euphoria
    Fatigue/weakness
    Glaucoma
    Hair loss
    Headache/dizziness
    Increased appetite
    Increased blood sugar
    Increased bruising
    Increased hair growth
    Increased sweating, especially at night
    Increased urination
    Indigestion/stomach upset
    Insomnia/other sleep problems
    Moon face
    Nervousness/restlessness/mood changes
    Slow wound healing
    Stomach ulcer
    Strokes
    Thin/fragile skin
    Other (please describe):    


20. What other prescription medications have you taken during your bout with PMR? (check all answers that apply)
    Antibiotic
    Bisphosphonate (e.g. Actonel, Fosomax)
    Etanercept (Enbrel)
    Lyrica
    Methotrexate
    Narcotic (e.g. OxyContin)
    Plaquenil
    Relafen
    Other (please describe):    


21. What over-the-counter medications/supplements have you taken during your bout with PMR? (check all answers that apply)
    Calcium/Vitamin D
    Ibuprofen (e.g. Advil)
    Naproxen (e.g. Aleve)
    Other NSAID
    Acetaminophen (Tylenol, paracetamol)
    DHEA
    Mangosteen
    MSM
    Other (please describe):    


22. What regular medical tests/procedures do you currently receive to monitor your condition? (check all answers that apply)
    
    

    Test/Procedure	Average Frequency
    Bone density scan	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    Erythrocyte Sedimentation Rate (ESR)	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    C Reactive Protein (CRP)	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    Rheumatoid Factor	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    Eye examinations (cataracts, glaucoma)	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    Blood sugar (diabetes)	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    Urine tests	Weekly   Bi-Weekly   Monthly   Quarterly   Semi-Annually   Annually
    Other (please describe):



23. What forms of exercise do you regularly engage in? (check all answers that apply)
    Bicycle riding
    Fitness class (e.g. Pilates)
    Gardening
    General health club/gym
    Rowing machine
    Running
    Stationary bicycle
    Swimming
    Treadmill
    Walking
    Water aerobics
    Weight training
    Other (please describe):    


24. What disabilities/effects has PMR/GCA had on carrying out the activities of your daily life? (check all answers that apply)
    Do you encounter problems:
    Rising from bed, chair, car?
    Dressing?
    Grooming?
    Reaching?
    Walking?
    Carrying out household chores?
    Gripping?
    Cutting food?
    Lifting objects?
    Cooking?
    Washing clothes, dishes?
    Other (please describe):    


25. How has PMR/GCA affected your quality of life? (check all answers that apply)
    The fatigue which accompanies PMR has curtailed activities in which you previously participated and enjoyed (e.g. sports).
    You suffer from sleep disturbance/irregularity.
    You had to give up paid employment or reduce your working hours due to PMR or GCA.
    Your relationship with your family and/or friends has changed.
    Other (please describe):    


26. Family History -- please check all conditions that apply to the family member:
    
    

    Relationship	PMR		GCA		Heart Attack		Stroke
    	Yes?	Age	Yes?	Age	Yes?	Age	Yes?	Age
    Father
    Mother
    Brother
    Sister
    Uncle
    Aunt
    Cousin

    
    If any other member(s) of your family suffer any of the above, please give details in the text box below:
    
    
27. Please describe any changes in your diagnosis in the text box below:


28. Please add any other information you think might be helpful to others regarding your experience with PMR in the text box below: