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What's your experience with Actemra for GCA?
Polymyalgia Rheumatica (PMR) | Last Active: Sep 11 6:04am | Replies (33)Comment receiving replies
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.
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@lmoross Were you on Prednisone when infected after your Alaska trip, or any other immune suppressing drugs?
I have been on Actemra for about 18 months (now injecting every 2 weeks), and have been avoiding indoor spaces in close proximity to people. So no planes, buses, crowded restaurants, indoor performances, etc. This has been quite limiting, and my rheumatologist says she wouldn't be quite as careful. She says the danger is much less than if I was taking Prednisone. But I'm still concerned that Actemra alone leaves me vulnerable to infection.
Were you on Actemra alone until May 2023, or still also taking Prednisone?
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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.