Your story makes me want to stop Actemra. I'm aware that serious infections are possible. Were you off prednisone at the time all of this happened? Are you currently on any treatment for any autoimmune conditions?

I used to have problems with infections when I combined prednisone with almost any other DMARD. I ended up on antibiotics and had a "pain crisis." My rheumatologist would discontinue the DMARD and increase my prednisone dose. She said the infections were caused by my immune system being suppressed too much.

I was able to get off prednisone relatively quickly after Actemra was tried. I have been on Actema alone for most of the last 4 years. My rheumatologist is reluctant to stop Actemra even though I said I would be willing to try stopping it because PMR seems to be in remission.

The only two times Actemra was stopped was when I had a flare of uveitis. My ophthalmologist wanted me on a TNF inhibitor and I couldn't take both Humira and Actemra. Humira may have helped the uveitis but my PMR symptoms returned.

The other time I was off Actemra was when it was being used to treat seriously ill Covid patients. There was a shortage of Actemra so my treatment was interrupted for 6 months. Humira was restarted to prevent uveitis but my PMR symptoms returned that time too.

When supplies of Actemra improved I was ready to restart it because of some serious lower back pain. A neurosurgeon was consulted and said I needed a lumbar fusion because of severe spinal stenosis made more severe because a large synovial cyst had formed.

I thought the pain was because I was off Actemra so I wasn't very excited about a lumbar fusion. I told the neurosurgeon I wanted to wait a year before doing the surgery. After a year, I told the neurosurgeon my symptoms improved after restarting Actemra. Another MRI was done and the synovial cyst was gone. The neurosurgeon and I mutually agreed that the lumbar fusion could wait.