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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 certainly understand how you feel. Doctors haven't even fully defined what PMR is let alone how to treat it. Long term prednisone caused me many additional problems in addition to PMR. My rheumatologist had to reassure me on several occasions that I still had PMR even though my symptoms changed and I had complications for long term prednisone use.
I do have confounding symptoms from other autoimmune disorders that I have. It was difficult for me to get diagnosed with PMR in addition to the rest of my autoimmune problems. Unfortunately there aren't many alternatives to prednisone for PMR. What gave your doctor the idea that your diagnosis was wrong?
What is the new medication you started this week?
Most of my difficulty getting off prednisone after I got a alternative to prednisone that worked was caused by adrenal insufficiency. That side effect can't even be tested for until you can maintain a lower dose of prednisone. I never got anywhere near the 3 mg dose that an endocrinologist said was necessary to check my cortisol level.
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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.