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Polymyalgia Rheumatica (PMR) | Last Active: 9 hours ago | Replies (35)
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How long have you been off Pred?
What upsets me is that doctors don’t coach about difference between PMR pain vs other pain. Instead they just keep saying go up in dose if you feel pain. I believe I could have been off prednisone years earlier assuming pains I felt were not PMR.
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When I was first diagnosed with PMR. A primary care doctor told me later that at first he thought I was a crazy person that wanted Prednisone.
My very first rheumatologist said my condition wasn't treated with Prednisone except she misdiagnosed me. A second rheumatologist overruled the first rheumatolgist and diagnosed PMR.
I told the second rheumatologist that the pain was nothing like what the first rheumatologist thought I had. I couldn't explain how the pain was different but it was different. I don't know how the second rheumatologist concluded I had PMR but she told me I was going to need Prednisone for a long time.
Over the course of 12 years the focus changed to how to get me off Prednisone. I had to learn how to describe various types of pain and couldn't just say "everything hurts." I didn't understand WHY it hurt everywhere until after I got completely off Prednisone. I still don't know why it hurt at the beginning of PMR.
If I had known why it hurt everywhere when I tried to taper off Prednisone maybe I could have tapered off sooner. I still have PMR but my rheumatologist doesn't want to treat it with Prednisone anymore,
As convoluted as it was ... it made PMR interesting. I think doctors have a hard time explaining PMR too,