there is hope for this dark journey we are on. I was diagnosed early January 2026, after having increasing pain during december. CRP and sed tests were off the scale. I refused pred until March 20 when I could no longer walk to the bedroom. During January I completely changed my diet (no cheese, no wine) and fasted 6 days. Then Jan 28 I fasted 31 days. Figured at least the weight gain, BP and cholesterol side effects would be less. I was on pred 30MG start which relieved my pain in like an hour, that was nuts. On a ski trip with 18 and next day I could ski. Canadian doc said 30 week, 25, 20, 15, 10 each week thereafter, then see me again. All pain gone. I continued tapering each week to 5, 2.5, then 1.25. Then pain came back and back up to 5 for couple days then 2.5. Follow up visit CRP was 5 (down from 22) In June saw a doc in Europe and did complete bloodwork. The doc said Dutch PMR protocol when bloodtests are in normal range, taper to 6 days, then 5, 4, 3 and so on each week. I feel that the fast gave my body a fighting chance (and I needed to lose 10LB and get my BP/cholesterol down).
Off pred now since late August (1 single day 2.5 1st week Sept) All this was background;-) How am I doing. Back in gym, core/pilates and yoga/stretching. For last 4-5 months working out with exercise band, think 2-3LB weights. Right now pain level 1-2. Day after working out level3 . It seems that without prednisone the pain is very, very manageable. But my muscles seem weak. It takes a lot of work, and strength is elusive. Like pulling up a tighter workout bra, I need help. And now, which apparently comes on months after tapering of pred, diverticulitis. For diverticulitis, recommended 24-48 hours clear liquids, which I did for 60 hours, pain away, back 24 hours later.
In short though, the pain at 1-2 is fine and off the drugs. BP way down. Going for a full blood workup in 2 weeks. Hope this helps. This thing can really mess physically as well as mentally/confidence.