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.

Jump to this post