What new treatments besides prednisone are availble for PMR, SAI?
After being on prednisone for a couple of years, I was able to taper off and enjoy a couple more years off before going back for some sort of flare that the subsequent problems have so outpaced that I don’t remember why I was back on it. But I was down to a couple of mg prednisone and started feeling not just PMR but a whole host of other non-specific symptoms — stiffness in finger joints and knuckle swelling that made my right hand ring finger suddenly huge at the second joint. I also had hip pain in one hip and dry eyes. I had been physically active and got progressively less so. I am in my 70’s and a friend a couple of years older than me was recently diagnosed with RA — enough of the symptoms I was experiencing seemed rheumatological so I made an appointment with my rheumatologist. While waiting, I got extremely dizzy and off balance so that I couldn’t walk without holding on to furniture. Thinking it was a geriatric manifestation of a UTI , I increased fluid intake while waiting for UTI testing and antibiotics. This helped my balance, which I now know was due to my prednisone withdrawal and development of SAI. My CRP and ESR levels were both very elevated, so my doctor kept me on the two mg prednisone, which were subsequently increased to 6 mg. Although he apologized for not having warned me of withdrawal problems, he is now not responding to my MyChart messages asking for further advice, and I wonder if he is avoiding me. I had notified my endocrinologist because I have osteoporosis and he follows me for that. My endocrinologist wanted to test adrenal function, and I told my rheumatologist in the spirit of transparency but wonder if he thought I asked for it behind his back. I am trying to get in with a new rheumatologist but need someone experienced. Whether I get with him or with someone else, I am wondering about new drugs besides prednisone. I would appreciate advice on both what you have found effective and how to approach this with my rheumatologist. Thanks
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That sounds very unprofessional on your rheumatologist's part, although it is entirely possible that their assistant is responsible for monitoring messages in the portal. You have no way of knowing without having an appointment when you can ask. Since you have multiple doctors involved in your overall treatment, it's not unreasonable for your endocrinologist to test your adrenal function. I'm assuming your rheumatologist knows that you are also seeing an endocrinologist so that should not be a problem.
Here are a few new treatments that I've read about...
-- Emerging Therapies for Polymyalgia Rheumatica and Clinical Implications
https://breakthroughsforphysicians.nm.org/rheumatology-clinical-article-emerging-therapies-polymyalgia-rheumatica-dua.html
-- Phase 3 Trial of Secukinumab in Polymyalgia Rheumatica
https://www.nejm.org/doi/full/10.1056/NEJMoa2602567
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