I've been on monthly Actemra infusions for 11 months. I had my quarterly bloodwork done this week. From when I began the infusions in Jan., my WBC has gone from 8 to 2.5. My absolute neutrophils went from 5975 to 1035. Before GCA/PMR, I wouldn't even catch a cold. Last Dec 2024, I had a flare. As a bonus, I got a cold during the holidays that lasted about 3 weeks. In July 2025, I got Covid for the first time. I went to Iceland in October 2025. I was on a small (16 people) tour on a minibus. I wore an N95 mask the entire flight over and while we were traveling around Iceland (except when eating). The day before I flew back, I started coughing. I ended up with a respiratory infections. I am just now getting over all the symptoms. I mask up when I go into stores, too.

I know that Prednisone and Actemra were going to compromise my immune system. It was a 'pick your poison' decision for me. I needed the Actemra to taper off of the Prednisone, without having a flare. It worked. I took my last dose of Prednisone this past week.

My rheumatologist will get the bloodwork results on Monday. During my last visit, he told me that I would be on my current dose of Actemra until Jan 2027. At that point, he will taper my doseage down. I'm elated that I'm off of Prednisone and I feel like I'm back to 75% of my pre-GCA/PMR condition. I was very physically active before I got GCA/PMR. I fear that I will be getting respiratory infections on a regular basis.