Actemra Infusions

Posted by ropnrose @ropnrose, May 31 9:18pm

I was diagnosed with PMR and possible GCA in July 2024. In January 2025, I began Actemra infusions, every 4 weeks. I am currently on 6 mg. of Prednisone. When I started my infusions, I tapered 1 mg./every two weeks. Overall, the quality of my life has improved. I felt noticeably better after the second infusion. No more fatigue. I was always very active before PMR/GCA. Since, my infusions, I have the energy to do most everything I was doing pre-PMR. I do get more tired after a day of activity, but I can live with it.

My question is--those of you who are on Actemra infusions, do you still have your PMR or GCA aches? My aches are minimal. I don't know if they're 69 year old aches or PMR aches. I'm just wondering if the aches ever completely go away.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

ropnrose | @ropnrose | 2 days ago

An update on my Actemra journey. I started monthly infusions in Jan 2025, at 360 mg. They have allowed me to taper off of prednisone completely. I feel better than I have felt in over a year and a half. With the infusions, I had to get baseline bloodwork done and must get them every 3 months. My last bloodwork results showed low WBC and neutrophils. Too low. Over time, each result was lower than the previous. I have had respiratory infections and COVID, since starting the Actemra. I rarely had colds before PMR/GCA.

My rheumatologist is going to reduce my dose to 240 mg., as eliminating Actemra is not an option. I knew when I was considering Actemra, I had to pick my poison. Actemra or continue on prednisone with no guarantee that I wouldn't have a flare. I am happy to off of Prednisone, but I was hoping that I wouldn't have this side effect from the Actemra. (I knew before I started, it could possibly happen).