I have PMR, 5 years now. My blood work has never showed any + signs of inflammation. I’m told a certain % don’t. (20%) I got off prednisone about 2 years ago just couldn’t tolerate the side effects anymore and my PMR is out of control. I can walk only short distances, measured in feet. My hands, arms, legs are involved. Numbness, tingling, pain in my biceps and most prevalent exhaustion. I’d say I have a serious case. I’ve tried 2 biologics (injectables) since getting off pred nothing…. Kevzara and Actrema. really feel terrible most days and now have a lengthy list of “things” that effect my pain level. I’m 75 now and think often of the end of my life, I’m ready! I was active, swam, exercised a lot and planned my week around these activities. Now I cancel more things than I do. I hate prednisone so much, I wish there were something else to try. Oh, also tried hydroxychloraquine…severe reaction.
Anyone heard of anything else?