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← Return to Kevzara (sarilumab) to treat PMR
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Kevzara (sarilumab) to treat PMR
Polymyalgia Rheumatica (PMR) | Last Active: Aug 24 6:34am | Replies (162)Comment receiving replies
@dadcue, thanks so much for your post. This info was provided to me by the Kevzara representative that helped to get me the discounted rate at the start of the medication consideration. Unfortunately, I did not know that I had benign hepatic liver cysts before I started Kevzara. I was informed that I had probably had them all my life without any issues. I started feeling some discomfort in my abdomen after the 2nd injection and my very in tune rheumatologist did not ignore the comment and halted the medication and referred me to a gastroenterologist for testing. Kevzara can actually grow the cysts and cause the need for surgery so it is not recommended for anyone with that history. I am very fortunate that it was caught early and appears to have resolved itself but I am still being closely monitored. Thanks so much for doing the dig that could save someone else from going through this kind of problem. Blessings!
Sandi
Replies to "@dadcue, thanks so much for your post. This info was provided to me by the Kevzara..."
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Kevzara wasn't available for PMR when my rheumatologist wanted me to try a biologic for "refractory PMR". I was on daily prednisone for 12 years to treat PMR. Actemra (tocilizumab) was tried because it was FDA approved in 2017 for GCA. Kevzara was FDA approved for PMR in 2023.
My rheumatologist believed Actemra should work for PMR because of how PMR and GCA are associated. In one year, I was off prednisone and PMR wasn't refractory anymore.
Sometimes I think people who have refractory PMR have more than one autoimmune problem at the same time. Uveitis is associated with inflammatory arthritis and not with PMR. I was diagnosed with reactive arthritis at least 20 years before PMR was added on to my diagnostic list of things.
Within a couple of weeks after getting off prednisone the first time and not having any PMR symptoms, I had a massive flare of uveitis but no PMR pain. Uveitis can cause vision loss so it was given priority over PMR.
My usual ophthalmologist of many years referred me to a uveitis specialist. The uveitis specialist thought I should have been referred to her years before. I had a long history of recurrent uveitis but I never had a flare when I was taking daily prednisone for PMR.
Actemra was stopped because it wasn't deemed to be optimal treatment for uveitis. I was placed back on 60 mg of prednisone and Humira (adalimumab) was started. Humira is a TNF-inhibitor which isn't deemed to be useful for the treatment of PMR. Humira probably worked for uveitis because it went back into remission.
Unfortunately PMR returned and I was unable to taper off prednisone and got stuck on 15 mg again. My rheumatologist and I had a long discussion about restarting Actemra. He said it would be impossible to treat both PMR and uveitis with the same biologic. I couldn't take both Humira and Actemra. He gave me the choice of which biologic worked best for me. I didn't want to be in constant pain so I chose Actemra and tapered off prednisone in a few months the second time.
I figured uveitis was an intermittent problem recurring every couple of years. If uveitis happened again, I could take 60 mg of prednisone again and taper off quickly again. A high dose of prednisone followed by a fast taper always worked for past flares of uveitis.
Humira was only being used to prevent uveitis from recurring but Humira didn't prevent the constant PMR pain from recurring.
I'm now doing a monthly infusion of Actemra which seems to work for PMR and has prevented a flare of uveitis for the last 2 years at least. In a total of 4 years of being on Actemra, I have very few if any side effects. My liver enzymes are slightly elevated though.
Actemra and Kevzara have similar risk profiles and they are both IL-6 blockers.