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I felt like a pioneer 6 years ago when Actemra was tried. Even though biolgics have been around longer for the treatment of other autoimmune disorders, there aren't many people with PMR/GCA being treated with IL-6 inhibitors. Kevzara is newer than Actemra but Kevzara isn't that new for treating RA and other disorders.
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"The only reason I'm anticipated to have difficulty getting off Kevzara is if my PMR doesn't go into remission."
This is my dilemma at the moment. Now my doctors are making comments in my medical records that I never want to stop taking Actemra. I said that but in the context of not wanting to go back to the pain and needing Prednisone again. I seem to be in remission as long as I stay on Actemra.
Whether or not "lifelong Actemra" is any better than lifelong Prednisone -- I don't know. My rheumatologist seems to think so. For other autoimmune disorders, these biologics are used for as long as they continue to work. I worry more about what happens if Actemra stops working.
It is reassuring to know that Actemra can be stopped anytime but my rheumatologist doesn't want me to have to be on long term Prednisone again. He is already talking about other biologics that might work if Actemra stops working.
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My understanding is that the biologic blocks the effects of the disease while being given but is not a treatment or cure in the usual sense of a drug that directly attacks and terminates the disease process. Thus, we're all in an illustration "remission" while we're on it. I've been told to eventually expect occasions when I'll stop taking it so we can get accurate inflammation markers labs and clinically assess. And yes, long term Kevzara is far preferred over Prednisone from a risk benefit calculation.