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Exercise is so important

Polymyalgia Rheumatica (PMR) | Last Active: Apr 14 9:29pm | Replies (27)

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Would you be interested in posting your invite to the PMRGCAuk forum? I follow that group, and I know there are some active people that might be interested in your group. I could post the information there if you're interested and aren't a member.

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Replies to "Would you be interested in posting your invite to the PMRGCAuk forum? I follow that group,..."

Can you do it please.
Thanks

I left that forum because of conflicts. They weren't interested in Actemra and said it wasn't pertinent to them. They advocated for more Prednisone for "quality of life" and waiting for PMR to burn itself out. They said Actemra and a fast taper off prednisone was "breaking their rules" for treating PMR.

I actually liked the forum as a whole because people had many personal experiences to share. It was only a couple of "experts" who thought they knew everything because of taking prednisone forever.

I think people on the other forum need more encouragement to keep trying to exercise with PMR. Taking it too easy ... waiting for PMR to burn out while I took Prednisone for 12 years certainly didn't work for me.

After Actemra controlled PMR, the only reason I had to do a slow taper was waiting for my adrenals to recover. That took the better part of a year all by itself. My overwhelming fatigue took time to resolve but it has improved tremendously since I stopped taking prednisone.

I still have some limitations because of some pain. My physical therapist says I shouldn't "power through" everything if it hurts but she enjoys how hard I work.