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Kevzara (sarilumab) to treat PMR

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

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@debjohn67

Very interested in knowing if you have any side effects with Actema? How long have you been on it. I know it subdues you immune ststem. Do you wear a mask when you go places? I have just been approved to start infusions for PMR. Thank you.

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Replies to "Very interested in knowing if you have any side effects with Actema? How long have you..."

So far, I am unaware of any side effects of Actemra. I've been having weekly injections of Actemra since around April 1, 2023, which is also the point at which I began tapering off the 60 mg/day of Prednisone I was prescribed. I am now down to 9 mg/day of Prednisone. If I can avoid relapse, I will be completely off Prednisone in mid-October 2023, but my rheumatologist says I will likely need to continue on Actemra for a year or two.

My symptoms from PMR and Giant Cell Arteritis are now virtually gone. This is quite dramatic since my symptoms were extraordinarily severe initially, with extremely high levels of inflammation (CRP measured at 347 mg/L), very severe 24/7 pain, nausea and significant weight loss, episodes of double vision, and some fever. (My PMR/GCA symptoms began on January 14, 2023.)

In terms of mask wearing, I mostly avoid large groups and being indoors in close proximity to other people, but in these situations I do wear a mask. I don't wear a mask at home, or outdoors unless I am in close contact with other people.

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