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Have you been able to taper prednisone with long lasting success?
Polymyalgia Rheumatica (PMR) | Last Active: Jun 17, 2023 | Replies (41)Comment receiving replies
The new Rheumy REALLY looked at my symptoms and listened to what I had to say. He took about an hour with me writing it all down, considering and ruling out diagnoses. My symptoms, even initially, did not match PMR. My GP and original Rheumy dismissed the idea that the issues had anything to do with a very nasty cat bite a few months before onset since I had been given intravenous antibiotics due to septicemia a few days after the bite. The new Rheumatologist took all of that into consideration. He is saying that my body reacted to the bacteria in the bite, and even though the antibiotics killed the bacteria. His diagnosis is spondyloarthropathy (reactive arthritis). I am now on sulfasalazine, which is an old drug, but has less side effects/organ damage/immunosuppression than the newer ones. I also have MGUS, so I am very tentative about taking anything that suppresses my immune system.
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I can tell you all about reactive arthritis! I was diagnosed with that 30 years ago. Symptoms of reactive arthritis. are very similar to PMR. As a matter of fact, I was begging people for prednisone thinking I was having a flare of reactive arthritis at the time PMR was diagnosed.
When PMR was diagnosed, the first rheumatologist that evaluated me said reactive arthritis wasn't treated with prednisone. My first rheumatologist labeled me as "noncompliant" because a GP was listening to me and was prescribing prednisone to me.
I don't know what happened behind the scenes but a different rheumatologist saw me at one of my follow-up visits. I don't know where the first rheumatologist went because I didn't request a new rheumatologist.
In any case, the second rheumatologist asked if I would come back to see her when I wasn't taking prednisone. She didn't say how long I should be off prednisone so I was off for 2 days before seeing her at the next visit. I think it must have been obvious to her because she took about 5 minutes to say I had PMR. My first question was, "What happened to reactive arthritis?" She said it was unfortunate to have both PMR and reactive arthritis!
I went back to the GP who was giving me the prednisone. He apologized about the experience I had with the first rheumatologist. He said at first he thought I was a crazy person who wanted prednisone but then he told me that he suspected that I had PMR.
It is very interesting about sulfasalazine. That was the first medication that was used on me to treat reactive arthritis. However, an ophthalmologist was prescribing massive doses of prednisone to treat the flares of uveitis which were associated with reactive arthritis. Prednisone worked much better to relieve the body pain so I quit taking sulfasalazine a long time ago.
The second rheumatologist who diagnosed PMR asked me once about sulfasalazine. She said she was reviewing some of original medical records. She said it was documented in my very old paper medical records that I had a "good response" to sulfasalazine. She thought maybe it would help me to get off prednisone. I told her that wasn't what I recalled about sulfasalazine. I didn't tell her I was self medicating with prednisone when I had the "good response" to sulfasalazine.