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Polymyalgia Rheumatica (PMR) | Last Active: 4 days ago | Replies (27)
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Replies to "'Useful to the individual' is how I'd define it. I can relate to your initial confusion..."
My experience with the first rheumatologist wasn't ideal. I had a long standing diagnosis of reactive arthritis for 20 years. I self medicated with prednisone prescribed for uveitis to treat flares of reactive arthritis.
I wasn't exactly compliant with my instructions but my first rheumatologist didn't need to label me "noncompliant." I was just used to doing things my way. I was the one who told my first rheumatologist I was diagnosed with reactive arthritis and I "just took prednisone for flares." My first rheumatologist said reactive arthritis wasn't treated with prednisone. That was news to me because that was how I treated myself for 20 years.
I don't know who said what to who but a primary care doctor said at first he thought I was a "crazy person" that wanted prednisone. He said he "suspected" I might have PMR and he should NOT have listened to the first rheumatologist.
After PMR was diagnosed by the second rheumatolgist, my primary care doctor apologized to me. He suspected PMR but the first rheumatologist said it wasn't. I didn't know anything about PMR at the time but I knew I needed prednisone. Until things got sorted out, prednisone was "restricted" so I wasn't a happy camper. I didn't care about the PMR diagnosis as long as someone prescribed prednisone to me.
My first 6 months of PMR was mostly a big misunderstanding. I was confused as much as anyone else. I didn't help the situation until the second rheumatologist asked me if the pain was anything like the pain of reactive arthritis. I said NO ... the pain was completely different than any pain that I attributed to reactive arthritis.
The second rheumatologist insisted I had PMR in addition to reactive arthritis. I had a hard time accepting that I had both.
After 12 years, my diagnosis evolved primarily to PMR with a "history of" reactive arthritis along with a "full range" of other rheumatology conditions ... not to mention adrenal insufficiency and steroid dependence. The latter is no longer true anymore. When Actemra was used to treat PMR, I was able to taper off prednisone.