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Replies to "Good luck. RA has been around a long time. Particularly the damage it does to hands..."
your exactly right: "Conclusions: Polymyalgia rheumatica remains a clinical enigma and its relationship to giant cell arteritis is no clearer now than it has been for the past 125 years. Diagnosing this disease is still almost exclusively dependent on the clinical acumen of a patient's medical attendant. Until an objective method of identifying it clearly in the clinical setting is available, uncovering the aetiology is still unlikely. Until then, clear guidelines on the future incidence and prevalence of polymyalgia rheumatica and the public health problems of the disease and its management, especially in relation to the use of long term corticosteroids, will be difficult to provide." https://pubmed.ncbi.nlm.nih.gov/25201886/
"RA has been around a long time."
"Corticosteroids appear to be all that works if the PMR becomes advanced."
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I think the narrative that "prednisone is the only option" gets perpetuated because there hasn't been the research done for PMR like it has been done for RA. Promoting the fast response to prednisone as a "miracle" while the long term side effects of prednisone are downplayed or "easy to manage" doesn't promote the pressing need for more research into PMR. For some reason, the lessons learned from RA aren't applied to PMR.
My PMR became refractory. I didn't ever think prednisone worked that well based on the number of relapses I had. I believe the long term use of prednisone actually perpetuates PMR. I think the immune system needs to be reset quickly and people need to taper off Prednisone as soon as possible. A sustained remission of PMR needs to happen sooner rather than later.
Prednisone worked well for uveitis and some other problems I had before PMR was diagnosed. A 60 mg dose for uveitis followed by a fast taper to achieve remission didn't cause many problems relative to the long term use of prednisone for PMR.