I was never diagnosed with GCA but Actemra was offered to me almost 5 years ago for PMR. I took prednisone daily for 12 years for chronic PMR symptoms.

I started with Actemra injections every 2 weeks while I was still taking 10 mg of prednisone daily. My rheumatologist didn't want me to take prednisone for the rest of my life. I didn't want to take prednisone anymore either except it was impossible for me to taper off prednisone.

After Actemra was started, I was off prednisone in less than a year.

My symptoms returned gradually whenever Actemra was stopped. It wasn't like the sudden "pain crisis" I would experience whenever my prednisone dose was too low.

For various reasons, my injection interval was changed from every 2 weeks to every week. I currently do a monthly infusion which was my choice. I like not doing injections anymore and my symptoms are well controlled on a monthly infusion.

I have been completely off prednisone for almost 3 years. I have not experienced any serious side effects from Actemra. However, there are potential side effects from all medications and Actemra is no exception.

I have discontinued 5 additional medications that were treating prednisone side effects. One by one, all my other medications have been stopped. I'm not sure when Actemra will be stopped. Except for Actemra, I'm almost medication free.

Actemra might not work for everyone. I tell people they won't know if it works or not unless they try it.

Actemra doesn't work immediately like prednisone does. My rheumatologist said to give it at least 3 months maybe longer to see if it works or not. You probably won't be able to be off prednisone in 3 months. However, Actemra can be easily stopped if it doesn't work or you develop any side effects from Actemra.

Be very careful taking Actemra. I felt it was a wonder drug. It put me in PMR remission. I took it from June 2022-May 2023. I traveled to Alaska in June this year. Apparently it suppressed my immune system to the point where I could not fight off Influenza A, even being vaccinated for it. Upon arriving home I experienced the worst health crisis I have ever had. I developed both viral and bacterial pneumonia, went septic and my heart went out of rhythm. I spent 8 days in the hospital with time in intensive care and possibly death as a result. I recovered somewhat but had pleural effusion that was attempted to be drained via two different procedures. Both failed and I ended up hospitalized for 18 days, when it was supposed to be 3-4. I contracted hospital pneumonia for which they pumped me full of antibiotics, causing drug induced hepatitis. I ended up discharging myself and am now seeking care at Mayo Clinic. I feel like my life has been forever changed. I am anemic, dizzy, and out of breath with the simplest activity. So….be careful taking Actemra and be prepared to basically isolate yourself if you do. Luckily my PMR has not returned since going off Actemra in May. Best wishes.