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Polymyalgia Rheumatica (PMR) | Last Active: Aug 29 12:15pm | Replies (26)
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HI all -- interesting discussion -- when I found this first ( 2020) paper by Sara Muller - I was encouraged that I could be the Class 4 patent - "Rapid and sustained recovery "-- as was my cousin . This study supports describing PMR patients ending up in at least 3 "buckets" - according to them- 5 clusters. I will attach the manuscript and the 2022 follow up
with a minor detour because of increasing Prednisone in July -- I had tapered to zero mg then ( woo hoo!) with the 0.5mg/2week strategy, and now tapering at 1mg/2 weeks.
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Sara Muller et al. are doing some great research in my opinion. More of a patient centered approach to figure out why long term treatment with steroids isn't working out so well.
The next step is to find alternatives when people can't taper off Prednisone easily.
Nearly all research papers I read about PMR point out the problems with long term steroids.
As this paper points out:
"There are concerns from professionals and patients regarding the potential side-effects of such long-term glucocorticoid treatment [1, 5–7], and evidence is emerging that people with PMR experience a high burden of incident glucocorticoid related morbidities, including vascular (23% increased risk), respiratory (25% increased risk), endocrine (41% increased risk) and gastroenterological (21% increased risk) morbidities. Glucocorticoid treatment can also affect the eyes (37% increased risk), in addition to bone health (111% increased fragility fracture risk), and can cause or exacerbate mood problems (29% increased risk) or, in some cases, lead to psychosis in psychiatric conditions."
At least the medical experts are aware of these problems. Some people like to say these Prednisone side effects are easy to manage but that truly isn't the case.