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How did you cope with the side effects tapering off prednisone?
Polymyalgia Rheumatica (PMR) | Last Active: Feb 19 1:42pm | Replies (179)Comment receiving replies
My doctor wants to try Actemera. How long did it take you to get off that drug after you stopped the Prednisone and did you have any side effects?
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My very first injection of Actemra was January 1st, 2019. I started with injections every 2 weeks. I got off prednisone for the first time in 12+ years. It took me 9 months to taper off prednisone with PMR under control. I didn't have any side effects from Actemra. I was feeling reasonably well as far as symptoms of PMR were concerned.
Something unexpected happened within 1-2 weeks after I stopped taking prednisone. I had a very serious flare of autoimmune uveitis.
https://www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/uveitis#:~:text=Uveitis%20is%20inflammation%20inside%20your,healthy%20tissue%20in%20your%20eyes.It was my first flare of uveitis in a long time but it wasn't my first flare of uveitis ever. Uveitis stopped happening when I was on daily doses of prednisone. I don't think uveitis ever happened after I was diagnosed with PMR.
My ophthalmologist put me back on 60 mg of prednisone. After conferring with my rheumatologist, Actemra was stopped. Actemra didn't cause the uveitis. Uveitis is just another autoimmune disorder.
My ophthalmologist didn't think Actemra was "optimal" treatment for uveitis. A different biologic called Humira was started and Actemra was stopped.
Humira and 60 mg of prednisone worked well for uveitis except as I tapered prednisone back down to 15 mg, my PMR symptoms returned. It became clear that I wasn't going to be able to taper off prednisone again because of PMR.
I wanted to be off prednisone. My rheumatologist gave me a choice:
Humira for uveitis or ... Actemra for PMR.
I choose Actemra for PMR
When Actemra was restarted my rheumatologist recommended weekly injections instead of every 2 weeks. Weekly injections allowed me to taper off prednisone even faster the second time.
My ophthalmologist wasn't too happy about me choosing Actemra. She thought it was just a matter of time until I had another flare of uveitis. I thought that would happen too but uveitis didn't flare up again when I was doing weekly injections of Actemra instead of every 2 weeks. Now my ophthalmologist says Actemra appears to be working for uveitis.
None of my doctors want me off Actemra because it works well for me. I have been on Actemra since it was restarted.
I currently do monthly infusions of Actemra because the infusions seem to work even better than the injections for me. I don't have any side effects.
I would recommend Actemra but it comes with no guarantees.