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PMR savvy doctors in Portland Oregon
Polymyalgia Rheumatica (PMR) | Last Active: Dec 2 11:59pm | Replies (22)Comment receiving replies
Thank you. When I first was diagnosed with PMR I was treated at OHSU and they quickly diagnosed PMR once I managed to get in. It's not a convenient location for me as I live on the eastside and the Rheumatology Clinic is on Marquam Hill, but it may be worth it. I'm glad to hear that you were offered a new therapy and it worked. If you don't mind my asking, was it Kevzara? Don't feel you have to respond if you don't want to. Thanks again!
Replies to "Thank you. When I first was diagnosed with PMR I was treated at OHSU and they..."
Kevzara is now an option for me since it was FDA approved for PMR in February 2023. However, I'm not on Kevzara (Sarilumab).
https://investor.regeneron.com/news-releases/news-release-details/kevzarar-sarilumab-approved-fda-first-and-only-biologic/#:~:text=TARRYTOWN%2C%20N.Y.%20and%20CAMBRIDGE%2C%20Mass,who%20cannot%20tolerate%20corticosteroid%20taper.
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There weren't any biologics that were FDA approved for PMR when I was offered treatment. When I started on Actemra (Tocilizumab) in January of 2019, Actemra was FDA approved for GCA. An authorization request was submitted and approved for me with the stipulation that I be treated "as if" I had the diagnosis of GCA. The other indication for Actemra was my being unable to taper off Prednisone and that all other alternatives to Prednisone had failed.
I took Prednisone for 12 years. The rheumatologist that I was seeing felt strongly that staying on Prednisone for the rest of my life wasn't a good option. The belief at the time was that Actemra was my best hope that I would ever get off Prednisone. My PMR was called relapsing and refractory. Now my PMR is said to be in remission. I have been off Prednisone for 4 years and my quality of life is much better than when I was on Prednisone.
Both Actemra and Kevzara are IL-6 receptor blockers. Either one should work for PMR but maybe not for everyone with PMR. It feels good to be off Prednisone.
https://www.actemra.com/gca/considerations/gca.html#:~:text=ACTEMRA%20is%20the%20first%20prescription,ACTEMRA%20is%20not%20a%20steroid.
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you may find an endocrinologist better at helping below the 5mg. Dadcue would know at what point they take over.