Kevzara?
I am 72 yo dx with PMR 1 1/2 years ago on Prednisone for treatment. It helped but threw me into diabetes! Since then wanted to get off Pred and went down 1mg per 2weeks. Finally off on March but symptoms so much worse. Tried 3 different prescription nsaids and not helping( but off diabetes meds!!) Anyone tried Kevzara? My family Doc told me to ask Rheumatologist about this med.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
I think Kevzara is worth a try after a year or two of Prednisone with relapsing PMR. I have never been on Kevzara but I have done weekly injections of Actemra. I currently do a monthly infusion of Actemra. Both Kevzara and Actemra are IL-6 receptor blockers so they work the same way.
https://www.nejm.org/doi/full/10.1056/NEJMoa2303452
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I was on Prednisone for more than 12 years until I was able to taper off Prednisone within a year after Actemra was tried. Twelve years of Prednisone was way too long!
I got lucky and had a dramatic response to Kevzara within days. I'm thrilled with Kevzara. Getting off the Prednisone is proving to be a challenge.....and I'm 100% over the Prednisone side effects already. OTOH, Kevzara side effects? None. Starting my 2nd year on it now, just got re authorized from the insurance.
Good luck.
Yes DadCue! 12 years is a very long time!! Hope your bones are ok! Haven’t heard of Acterma
Good luck and thanks,
Kass
Fantastic! Why do doctors start patients off with prednisone instead of Kevzara?
Part of the reason is that PMR and GCA have a long history of being treated with corticosteroids (prednisone in the USA). The rapid response to prednisone was like a miracle ... never mind the side effects of long term prednisone use.
https://pubmed.ncbi.nlm.nih.gov/16901030/
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PMR was never given much thought by the medical research community. However, doctors in general dislike prednisone as a long term treatment for any disorder. Unfortunately, prednisone was called "the only treatment" for PMR because, until recently, nothing else worked well.
That all changed in 2017 when Actemra (tocilizumab) was shown to be effective for GCA. The FDA approved Actemra (tocilizumab) for the treatment of giant cell arteritis (GCA) in adults on May 22, 2017 based on the GIACTA study results.
https://www.fda.gov/news-events/press-announcements/fda-approves-first-drug-specifically-treat-giant-cell-arteritis
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Five years later, the SAPHYR Study showed that Kevzara (sarilumab) was effective for treating PMR. The FDA approved Kevzara (sarilumab) for the treatment of polymyalgia rheumatica (PMR) on February 28, 2023.
https://www.the-rheumatologist.org/article/fda-approves-sarilumab-for-the-treatment-of-adults-with-glucocorticoid-resistant-pmr/
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Prednisone is still considered to be the "first line treatment" for PMR and GCA simply because it works quickly to relieve the symptoms. The problem is that patients are unable to taper off prednisone quickly. The side effects of long term prednisone use are notorious in the medical community.
Many doctors and patients are set in their ways. They are wary of medical breakthroughs so doctors leave their patients on prednisone. The other reason is that biologics in general are expensive treatment options.
Probably protocols to try other drugs first!
Actemra (tocilizumab) was FDA approved to treat GCA back in 2017. I was started on Actemra in 2019 to treat PMR. That was long before Kevzara was FDA approved for PMR in 2023.
My rheumatologist believed in 2019 that Actemra "should work" for PMR since there is a close association between PMR and GCA. There was a special request made on my behalf to get Actemra approved for me. Actemra was approved for me mostly because I was unable to taper off prednisone for 12 years and all other treatment options had failed. My quality of life was at a low ebb after 12 years of Prednisone. Things have improved dramatically since I started taking Actemra. I have now taken Actemra for 6 years. Actemra continues to work well for me with minimal side effects.
My rheumatologist and I agree that I'm much better being on Actemra compared with taking Prednisone for the rest of my life. I would like to stop Actemra sometime in the future but my rheumatologist doesn't think that will be possible for various reasons.
Kevzara will be tried if Actemra stops working. Having other options besides Prednisone is a good thing!
Yes ... that was true in my case. Since Actemra wasn't FDA approved for PMR my rheumatologist had to say "all other treatment options had failed." He also said Actemra represented my "best chance of ever getting off Prednisone."
I notice people are getting on Kevzara soon after being diagnosed with PMR so I think people are requesting it sooner. Doctors seem to be less reluctant to try Kevzara because no doctor wants their patients on long term prednisone.
A high percentage of patients (estimates are more than 50%) experience a relapse when their Prednisone dose is tapered lower. I think doctors are giving prednisone one relapse before introducing Kevzara for "relapsing" PMR.
No medication will work for everyone so neither will Kevzara or Actemra. However, I think Kevzara is worth a try for PMR.