@gertrudedallas, I moved your question about Actemra (tocilizumab) to this related discussion where @pag1949 got responses to similar questions:
- Is Actemra (tocilizumab) for GCA worth the side effects? https://connect.mayoclinic.org/discussion/is-actemra-for-gca-worth-all-the-side-effects-also-pa-vs-md/

You might also be interested in this related discussion:
- What's your experience with Actemra (tocilizumab) for GCA? https://connect.mayoclinic.org/discussion/gca-1/

@gertrudedallas

I started Actemra on January 1st, 2019 --- 7 year anniversary in one month!

I'm still doing a monthly Actemra infusion with no serious side effects.

Actemra gave me my life back compared to my 12 years on prednisone with many side effects. I'm still recovering from long term prednisone use.

Are you more nervous about long term prednisone side effects or the potential side effects from Actemra?

If prednisone isn't causing you any problems ... maybe stick with prednisone. Actemra is costly and prednisone is cheap.

If you are having problems with prednisone ... I think Actemra is worth trying regardless of how much it costs. No guarantees that Actemra won't cause problems especially if you still need prednisone. I have been off prednisone for 5 years and I'm definitely better off prednisone and on Actemra.

@gertrudedallas
I have been on Actemra for
Over 1 year. It helps and no problems. Trina

@gertrudedallas I was diagnosed with PMR/GCA in July 2024. The megadose (60 mg) of Prednisone that I was initially on for 6 weeks, pretty much took care of my GCA symptoms. From August 2024 to December 2024, my tapering was going well. However, I was suffering from multiple side effects from the Prednisone, the worst being high blood sugar. It turned me into a diabetic. Also, it increased my cholesterol. In December 2024, I got to 10 mg/day and had a flare. My GCA symptoms returned. I asked my rheumatologist to prescribe Actemra infusions for me. I started them in Jan. 2025. I had a nice easy taper to the beginning of November 2025, when I was totally done with Prednisone. The only side effects from Actemra that I have experienced, is a compromised immune system. I used to never get sick, but I got Covid for the first time in July 2025 and a pretty bad respiratory infection in October. Both illnesses took me almost a month to get over.

Actemra gave my life back to me. I was able to resume the activities that I love. Golf, pickleball, bike riding, camping, and traveling. I don't think I would have been able to taper off of the Prednisone, so easily.

I picked my poison, and I chose Actemra over Prednisone. I'd do it again in a heartbeat.