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Polymyalgia Rheumatica (PMR) | Last Active: 9 hours ago | Replies (35)
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Replies to "How long have you been off Pred? What upsets me is that doctors don’t coach about..."
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,