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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
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.
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@dadcue, Just wanted to say this TOTALLY resonated with me: "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."
I'm pleasantly surprised your GP even admitted that much to you after you finally got on the right path.
Sadly, I'm used to providers thinking I'm crazy. But when my dad's PMR first showed up, we eventually self-diagnosed it--we knew already he had a strong family history of autoimmune conditions, and his sister is an internist who also believed it was PMR (but she lives out of state). Yet when we took him to his PCP's immediate care clinic to see one of the MDs on call to review his labs (I had to do the communication because my dad was in no shape to be able to explain)--it was me, and both of my parents. And I honestly wanted to melt into the floor because of the way the person at the registration desk, and then the nurse they sent out to talk to us looked at us like we were hysterics freaking out about lab values. Other than the obvious-to-us PMR symptoms, my dad at that point had an ESR of 120. Even if it wasn't PMR, we knew something needed to be done. The MD on call (the whole reason we went there) refused to see my dad, and they told us if we really believed it was that serious, that we should go to the ER.
I felt so bad for my parents because we're an immigrant family, they don't love seeking out healthcare (but then, who does?) and I had encouraged them to go, and I drove them to the clinic, only for all of us to end up feeling humiliated.
His PCP never apologized, but after two more phone calls with his nurse and my mom asking the nurse to ask the doctor to please look up PMR, then we got the RX for prednisone and I immediately started looking for a rheumatologist for him. Things are way better with a good rheumatologist; thankfully we found a good one on the first try, phew.