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@csm70

Hi.... I would like to get your insight on Actemra. I was diagnosed with GCA in October, 2023... Started with 60mg Prednisone and after 7 months started weekly Actemra injections (while still on 10mg Prednisone ). I am off Prednisone since end of July and haven't had any relapse. Have you heard anything about tapering off or discontinuing Actemra ?
Thanks and take good care of yourself.

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Replies to "Hi.... I would like to get your insight on Actemra. I was diagnosed with GCA in..."

No real insight except to say Actemra works well for me. I'm glad you were able to get off Prednisone relatively quickly.

I have been off Prednisone for close to 4 years but I still do a monthly infusion of Actemra. I started out doing the injections and they worked well too.

Actemra can be stopped easily so there is no need to taper off like we have to with Prednisone. Actemra doesn't suppress the adrenals which is the primary reason for doing slow tapers when stopping Prednisone. If you feel well being off Prednisone then it isn't likely you have adrenal insufficiency.

Some doctors stretch out the interval between injections as a way to see if a relapse might occur without stopping Actemra completely. Many people do have a "sustained remission" after stopping Actemra but there is always the possibility of a relapse.

I didn't have an abrupt relapse when I went 7 weeks between Actemra infusions. However, my inflammation markers crept up so my rheumatologist said I better stay on an infusion every month.

I personally haven't had any adverse effects from Actemra in 5 years. Side effects are possible but my rheumatologist thinks it is better to be on Actemra compared to "long term" or lifetime treatment with Prednisone. My quality of life is much better since I stopped taking Prednisone. I was able to stop about 6 other medications that were treating Prednisone side effects.

I know people in some countries are restricted to 1 year of Actemra for the treatment of GCA regardless of whether Actemra works for them or not. We don't have that restriction to worry about in the United States.