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@karenmortimer

After 9 months of watching my mobility slowing suffer to the point of not being able to do everyday activities. I finally was diagnosed in Feb with PMR and started with 15 mg of prednisone. I was never was able to get on a lower dose and still had pain. In April I was diagnosed with GCA 50 mg of prednisone a day. I understand that we need to be patient with these diseases. We are fortunate that there is treatment and recovery in our future. This group has been so good for me to read each morning and feel like I'm not alone. I am beginning to have some side effects from the large daily dose of prednisone. The worst side effect is now I have shingles. I have terrible pain on the upper side of my back and a few bumps. I had the vaccine so I probably have a mild case because of that, but I was scheduled to start my shots of Actemra today and start lowering the medication dose. The doctor has put that on hold. Has anyone had a similar experience?

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Replies to "After 9 months of watching my mobility slowing suffer to the point of not being able..."

wow - i feel startled by your comment re: Actemra. A quick google search re: biologicals for PMR shows the site for KEVZARA and the recent FDA approval "To treat adult patients with polymyalgia rheumatica (PMR) who have had an inadequate response to corticosteroids or who cannot tolerate corticosteroid taper." i am only searching out new literature and reviews about PMR ( post 2018) The Am Coll Rheumatologists ( ARC) guidelines were published in 2015. this title from Feb 2023 is easy to read : "Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica". Christian Dejaco - first author. PS>My doctors are at Mass General and that was one of the sites for the clinical trial for Kevzara in PMR>