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PCP advising fast taper

Polymyalgia Rheumatica (PMR) | Last Active: Jul 7 6:36am | Replies (28)

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Profile picture for Mike @dadcue

I was treated 12 years with Prednisone for refractory PMR. When a biologic called Actemra (tocilizumab) was tried, I was off Prednisone in one year.

Actemra is FDA approved for GCA but "should work" for PMR. The biologic that is FDA approved for PMR is called Kevzara (sarilumab).

I'm an actual person with PMR and treated with Actemra. I have been off Prednisone for almost 5 years. My inflammation markers increase when my monthly infusion of Actemra is held for too long. I don't have any sudden relapses (flares) anymore. My symptoms are well controlled.

Many of my side effects from being on Prednisone for 12 years are improving. I don't seem to have any side effects from Actemra. I can't say Actemra "cured me." However, my rheumatologist says I'm "better off" being on Actemra rather than Prednisone for the rest of my life.

I think only a rheumatologist would consider a biologic to treat PMR. Sometimes, I have asked my PCP a question about Actemra. My PCP says I need to ask my rheumatologist because biologics are "out of my PCP's league."

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Replies to "I was treated 12 years with Prednisone for refractory PMR. When a biologic called Actemra (tocilizumab)..."

Thank you @dadcue My PCP responded to my question and told me to increase Tylenol to 2 tablets 3x a day and report back in a few days. She also sent a prescription for more 1mg prednisone in case I need it later. She is a geriatric specialist, I assume she is familiar with this disease. I trust/hope she would consult with a specialist if she is not. I looked into seeing a rheumatologist but most require a referral.