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Diagnosed with PMR 16 days ago.
Polymyalgia Rheumatica (PMR) | Last Active: Jul 27 12:36pm | Replies (56)Comment receiving replies
My last Actemra injection was June 9, 2025 and before that I was injecting every 6-7 weeks. I don't plan to use any more. I've been off prednisone since late 2023.
I've got a stash of prednisone, plus one more shot of Actemra in the frig, in case of relapse.
So far, so good.
Replies to "My last Actemra injection was June 9, 2025 and before that I was injecting every 6-7..."
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I have been able to go 7 weeks between Actemra infusions. My inflammation markers gradually increase and my symptoms start to return at about 6 weeks. Fortunately, it wasn't like a flare and a sudden relapse overnight.
I asked my rheumatologist if I will ever get off Actemra. There isn't any plan for me to stop Actemra anytime soon.
The reason was something that I didn't like to hear. My rheumatologist said my immune system, isn't likely to forget about what it has been attacking for so many years. The immune system is capable of forming a "memory" but for autoimmune conditions that is detrimental. Maybe if remission had been achieved sooner and was sustained maybe my "immune system memory" would not be so ingrained,
https://pmc.ncbi.nlm.nih.gov/articles/PMC11860616/.
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Another concern is that my immune system might form antibodies against Actemra and render it ineffective. In that case Actemra might need to be stopped because Actemra might stop working. The development of tocilizumab-specific anti-drug antibodies is rare, but it has been documented in various studies.
https://www.verywellhealth.com/antibodies-to-biologics-4846279.