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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: Nov 18 7:12pm | Replies (1907)Comment receiving replies
Hello @dadcue, I would like to add my welcome to Connect along with other members here in the discussion on PMR. I've had 2 occurrences of PMR but it is currently been in remission a little over 2 years which makes me happy. I think it's really good news for others suffering from PMR to hear how Actemra (tocilizumab) has allowed you to be off of prednisone while treating PMR.
@jules11 and other members who are interested to learn more about the drug, here is some information on how it works:
February 13, 2018 - Imaging Changes Examined in Tocilizumab-Treated Polymyalgia Rheumatica:
-- https://www.rheumatologyadvisor.com/home/topics/research/imaging-changes-examined-in-tocilizumab-treated-polymyalgia-rheumatica/
Tocilizumab is effective against polymyalgia rheumatica: experience in 13 intractable cases:
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4663453/
@dadcue, did you stop taking prednisone for the PMR once you started the Actemra or were you able to taper to a lower dosage of prednisone?
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I was able to completely taper off prednisone twice. Both times from the 10-15 mg range to 0 mg in 6 months. It could have been faster except for a concern about adrenal function. Unfortunately, a flare of uveitis occurred after the first time and I had to go back to 60 mg of prednisone. Humira was tried for uveitis but it didn't seem to work well for PMR. In consultation with my rheumatologist and ophthalmologist --- I decided to restart Actemra. My doctors thought a weekly injection instead of every 2 weeks might work better to control both PMR and uveitis.
I can't say that I want to take Actemra forever but so far I have no side effects that I'm aware off. I had a long litany of side effects from prednisone. Overall, I tolerated prednisone reasonably well but my overall well being had a downward trend. Also, i can't say prednisone induced a remission of PMR. So far, things seem much better on Actemra.