@boomermeg

My very first dose of Actemra was January 1st, 2019. I didn't start on New Years Day for financial reasons because Actemra doesn't cost me anything. A new year seemed like the best time to try something new. It is a shame that biologics are so expensive.

My rheumatolgist had to get authorization to give Actemra to me. It took some doing but it was approved as an exception. I think it was a "compassionate use" authorization since Actemra isn't FDA approved for PMR. The stipulation was that I be treated with the protocols used for GCA patients even though I don't have GCA. I have other autoimmune conditions besides PMR but not GCA.

I was worried the authorization would be revoked during Covid when Actemra had to be stopped for a while. My rheumatologist reassured me the authorization was good for as long as Actemra worked for me. My rheumatologist has no reason to discontinue Actemra and doesn't have any plan to stop Actemra. I think there is some educational value from me being on Actemra. Some of my rheumatology visits attract several rheumatologists who are being trained. I'm not enrolled in any research study but I'm included in the discussions the doctors have.

I'm happy for anyone who is offered an IL-6 inhibitor for PMR. It might not work for everyone but there are many people who now report positive results. It is important to stay positive even when things seem like they will never improve.

You are right ... Kevzara does take some time to work. I didn't really know for sure if Actemra was working until I was able to taper off Prednisone. I told myself Actemra was controlling PMR. When something hurt my rheumatologist wanted to know about it. It was easier to separate PMR from other things that hurt when Actemra controlled PMR.