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@isabelle7

@dadcue
Could you please confirm that the first time you were on Actemra you were doing injections, not infusions?
And that once you started infusions you were able to taper to no more prednisone and have not since relapsed (while still doing monthly infusions of Actemra).

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Replies to "@dadcue Could you please confirm that the first time you were on Actemra you were doing..."

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."
https://www.urmc.rochester.edu/neurosurgery/services/conditions/trigeminal-neuralgia.aspx
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.