My very first injection of Actemra was on January 1st, 2019. I thought it was appropriate to start anew. I wasn't overly optimistic about Actemra. My rheumatologist waffled about how to start Actemra. The only discussion we had before starting was that Actemra was something new and I would get a monthly infusion. That was contingent on me being willing to try it if ... (BIG IF) ... my rheumatologist could get it approved for me. I was diagnosed with PMR only and not GCA. I actually have been diagnosed with multiple autoimmune disorders but never GCA. I had some of the symptoms of GCA but not the diagnosis. I still haven't been diagnosed with GCA. I had plenty of facial pain and vision disturbances for 30 years but it wasn't GCA. The facial pain was a vascular problem combined with a nerve problem and diagnosed as trigeminal neuralgia or sometimes called the "suicide disease."

Prednisone helped this condition too but it isn't usually treated with prednisone.
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Actemra was approved for me with the recommendation that I would be treated "as if I had GCA." When my rheumatologist was deciding how to start me on Actemra, he said I should do an injection every 2 weeks to "play it safe.' I can't say that instilled a lot of confidence that Actemra would help. My rheumatologist said the research at the time showed very little difference between doing weekly injections versus injections every 2 weeks for the treatment of GCA.

When I did injections every 2 weeks I was able to taper off Prednisone but it took me a year. If PMR symptoms were the only concern, I could have tapered off in 3 months. My issue was mostly the low cortisol level which was a side effect of long term Prednisone use.

When I tapered off the first time it didn't last very long. One of my other autoimmune conditions (uveitis) flared up. It was a massive flare of uveitis called panuveitis and it was the worst uveitis flare that I can recall. Actemra was stopped in favor of a different biologic and 60 mg of prednisone. The uveitis flare resolved but when I tapered my Prednisone dose down to 15 mg, all the body aches and pain recurred. I'm not sure what caused all the pain but it was the same pain I had for 12 years when my Prednisone dose was too low. In any case, my rheumatologist implored me to give the new biologic a chance to work. I needed to give the other biologic 3 months to work. Three months was all I could do. Actemra was tried again except I did weekly injections instead of every two weeks. I was off prednisone the second time in less than 3 months

Monthly infusions were initiated mostly because of supply chain problems during Covid. I could not get any injectable doses of Actemra. I had a major flare and was back on Prednisone. When Actemra was available again, I was restarted on a monthly infusion and the pain stopped quickly in a matter of a few weeks.

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