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@dadcue

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.

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Replies to "No real insight except to say Actemra works well for me. I'm glad you were able..."

Thanks for the response. Do you know which markers are being used to monitor inflammation?... Based on what I read about Actemra the usual ESR and CRP bio markers are not reliable readings as Actemra inhibits IL-6 receptors. Is your rheumatologist using a different set of bio markers to monitor progress?... I am starting this process and any feedback is appreciated.