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Kevzara (sarilumab) to treat PMR

Polymyalgia Rheumatica (PMR) | Last Active: Apr 4 7:55pm | Replies (156)

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@dadcue

I was on prednisone for 12 years primarily for the treatment of PMR. I have multiple autoimmune disorders which my rheumatologist calls "systemic inflammation" or a "full range" of rheumatology problems.

Four years ago, I started doing Actemra injections every two weeks and tapered off prednisone in 7 months. I'm currently doing monthly Actemra infusions. I haven't had any side effects from Actemra other than slightly elevated liver enzymes and slightly low neutrophil counts.

I have stopped Actemra twice but my symptoms returned each time. My rheumatologist said the reason why my symptoms returned was because of "immune memory." Normally, the immune system develops a memory for pathogens foreign to the body. My rheumatologist thinks my immune system has developed a memory for attacking me.

I had many side effects during my 12 years of taking prednisone, My medication list grew from no medications to 12 medications for "prednisone related" side effects.

My medication list has shrunk since being on Actemra. I take a multivitamin which is optional. I still take 3 other medications that are "recommended" for residual prednisone related side effects. I also "need to take" warfarin for life because of a massive, multiple and bilateral pulmonary embolism. The "unprovoked" pulmonary embolism happened while I was taking prednisone. There was some discussion while I was intensive care that prednisone put me at a greater risk for cardiovascular events.

One advantage of Actemra is that you can stop it at any time for any infection or any side effect. I don't recall any infections during my 4 years while on Actemra alone. My side effects from Actemra are deemed to be minimal.

I started Actemra before the Covid epidemic. One of the reasons that I stopped Actemra was because supplies of Actemra were being diverted to seriously ill patients hospitalized with Covid.

I haven't ever tested positive for Covid. I wear a mask regularly but not as much lately.

One of the side effects of Actemra is an increased risk of a serious infection. I haven't needed to discontinue Actemra for any serious infection that I have had while on Actemra.

I recall having a knack for getting infections while on prednisone

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Replies to "I was on prednisone for 12 years primarily for the treatment of PMR. I have multiple..."

Thanks, this is very helpful. You mentioned that Actemra can be stopped at any time (unlike Prednisone). This is indeed an important advantage that had not occurred to me. I assume suddenly stopping Actemra would increase the risk of a PMR relapse, though. Otherwise it would have no advantage over tapering Prednisone alone.