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Polymyalgia Rheumatica (PMR) | Last Active: Mar 5 11:55pm | Replies (101)
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@pah17
I had the same issue, ie, not really knowing how much pain was acceptable….my doc was of no help whatsoever…he recommended Tylenol which doesn't touch the pain!
I joined another forum HealthUnlocked…. PMRGCAuk which is run bu actual PMR sufferers. I got a definitive answer to up my pred dosage from 5mg to 10mg becuse i had tapered way too fast! Wow! I have never felt better since i was first diagnosed and been taking prednisone!
Anyway, check out their forum…they are very kind and helpful people!
Replies to "@pah17 I had the same issue, ie, not really knowing how much pain was acceptable….my doc..."
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Welcome @gypsyrozbud, We also have a lot of great members here on Connect that are PMR patients with a lot of experience which keep our PMR Support group running pretty well. If you haven't seen this discussion, you might want to take a look:
-- How to Slowly and Safely Taper Off Prednisone but ... no set rules.
https://connect.mayoclinic.org/discussion/how-to-slowly-and-safely-taper-off-prednisone-but-no-set-rules/
My rheumatologist was a great help to me when it came to tapering. Basically telling me that everyone is different when it comes to acceptable pain when tapering and that is determined by the patient. For me, it was something less than 2 on a pain scale of 0 to 10. He suggested I keep a daily journal with my level of pain when I woke up in the morning along with my dose of prednisone for the day. If it was time to taper to the next lower dose and my level of pain was above a 2, then I either went a few days more to see how I felt or if the pain was more I increased my dosage by half of my previous taper down amount.