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PMR - What do you wish you had known . . .
Polymyalgia Rheumatica (PMR) | Last Active: Aug 13 8:45am | Replies (163)Comment receiving replies
I have a question, please.
Diagnosed early January, started Pred in March and have tapered from 30MG. At 2.5MG now since June 5, 2026. A little scared to lower below 2.5, but doc says to trust the SED test. SED test way down, but PMR is NOT gone. My question is that I have worked out, but the pain is intense. I skipped just a single day working out, and pain was gone. Started back and pain returned. Not like the old heavier work outs, but 2LB weights for shoulders and 5LB for bi/triceps. Gently, slowly with a lot of stretching. Maybe 15 min weights, then stretching/core/yoga. For 2 months I just worked out with a theraband, so not crazy. The pain can be eyewatering. OK, the pain cannot come from 2LB weights after consistently working out for months, can it?? PMR causes pain but skipping a workout lowers the pain to almost none. Are muscles just physiologically messed up because of PMR. I still barely have the strength to pull a tighter sports bra up and off. Any thoughts please would be appreciated.
Replies to "I have a question, please. Diagnosed early January, started Pred in March and have tapered from..."
@pmrnew Before PMR I was walking around 5 mile/day. Now I struggle to get out of bed! I started out like most everybody on 15 mg prednisone over a year ago.Tried to taper down. Now, I have been on Kevzara since April which hasn't done much yet. (If you try Kevzara, watch out for the price. If you do not have insurance, it will run you slightly over $6,500 for two injections!!!) Last week, my rheumatologist added 5 mg prednisone as needed. I hate going back on the Devil Drug Prednisone. PMR doesn't show so it is difficult for people to understand the condition,
@pmrnew Exercise naturally causes inflammation and adding that on top of the PMR inflammation. That is why it hurts on days you exercise and it does not hurt on days you don't exercise. If you insist on working out, then you might dial it back to where you can do light exercisies and still not hurt.
You are smart to want to exercise. I did not and now I am dealing with some atrophy of my tendons and other connective tissues. It is a delicate dance to find the exercise Goldilocks zone - the "just right" amount where nothing is lost and damage is not done. Here's hoping you can find your zone.
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@pmrnew
I’m not sure. My working out with weights helps my pain but only a very short time. In my experience prednisone does not relieve my pain if it’s lower than 20 mg.