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Is Actemra (tocilizumab) for GCA worth the side effects?
Polymyalgia Rheumatica (PMR) | Last Active: Dec 9 7:18pm | Replies (30)Comment receiving replies
I was diagnosed by bilateral biopsies with GCA after loss of eyesight in right eye in Nov. 2023. Immediately was started on prednisone 60 mg. After two months started tapering prednisone and started Actemra 162 mg. Took both while I tapered prednisone. Stopped prednisone after 6 months while continuing Actemra. I have been taking Actemra by weekly injection until last month. This month started tapering my injections to every 10 days. During these 2 years only prednisone gave me terrible side effects during and after. I have never had any side effects from Actemra. All labs have been and continue completely normal. My eyesight returned after only a few weeks on prednisone with no problems since. I am treated by a rheumatologist (D.O.) I plan to stay on Actemra as long as my physician directs me. I hope to never take prednisone again. Best wishes.
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@mam24
Prednisone probably saved my eyesight more than 30 times. I was very grateful for Prednisone when I only needed to take it on a short term basis.
I was never diagnosed with GCA but I had annual flares of uveitis for approximately 20 years. My routine was 60 to 100 mg of Prednisone but I tapered off again in 4-6 weeks. My ophthalmologist never tried anything else other than Prednisone because it worked so well and I could taper off quickly.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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I didn't mind Prednisone when I only had to take it for a few weeks to treat every flare of uveitis. When I was older at the age of 52, my rheumatologist diagnosed PMR, That was when Prednisone was initiated "long term" for 12 years. I never could taper off Prednisone again until Actemra was tried. I had many side effects from long term Prednisone not to mention one medical complication after another.
Fortunately, Actemra eventually allowed me to permanently discontinue prednsone. I have now been on Actemra for 7 years and completely off Prednisone for about 5 years. I don't have any serious side effects from Actemra but I still have residual side effects from long term Prednisone use. However, I have been able to discontinue about 5 additional medications that were treating the Prednisone side effects.
More importantly, I don't have flares of uveitis or PMR anymore. My rheumatologist doesn't plan to ever stop Actemra. I asked my rheumtologist when Actemra would be stopped. He asked me why I would want to stop Actemra when there wasn't a good reason to stop Actemra.
We agreed to continue Actemra because it was keeping me off Prednisone!