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Discussion2 year struggle to get off prednisone still hard to get from 3 to 2mg
Polymyalgia Rheumatica (PMR) | Last Active: May 15 9:20am | Replies (39)Comment receiving replies
Replies to "Thank you, yes, this does give me a better idea of the criteria a Rheumatologist would..."
Our government doesn't get overly involved in medical decisions except for granting FDA approval of the research submitted by pharmaceutical companies for the treatment of any disease.
Actemra hasn't ever been FDA approved for PMR because the research hasn't been done. My rheumatologist was just aware of the GIACTA research done for GCA and subsequent approval of Actemra by the FDA for the treatment of GCA. I haven't ever been diagnosed with GCA but plenty of patients who have GCA also have PMR. My rheumatologist believed Actemra "should work" for PMR alone because he knew it was working for patients who had both GCA and PMR.
The recommendation from the medical approval board at my hospital was to treat me "as if I had GCA" based solely on my medical records, symptoms of PMR, and being unable to taper off Prednisone along with the"failure" of multiple alternative medications.
Kevzara is now FDA approved for PMR. With that approval, I now could easily be switched and treated with Kevzara as another option. However, since Actemra was approved for me, it won't be taken away and stopped as long as it still works for me.
For me to get approved for Actemra for "PMR alone" was just lucky. My rheumatologist had to convince some other doctors that Actemra might work for me and I'm grateful that he did that. That was over 4 years ago when no biologic was FDA approved for PMR.