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Polymyalgia Rheumatica (PMR) | Last Active: Mar 13 6:24pm | Replies (63)

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@dadcue

I don't think they really know what PMR is. Perhaps a combination of autoinflammatory and autoimmune.

https://pubmed.ncbi.nlm.nih.gov/34798314/#:~:text=Background%20and%20aim%3A%20Polymyalgia%20rheumatica,partially%20understood%20immune%2Dmediated%20mechanisms.

My rheumatologist made a comment to me once that made me curious. I'm not sure what disorder he was referring to because I have several. We were discussing "immune system memory." His comment was, "my immune system was unlikely to forget what it has been attacking for so many years."

I googled "immune system memory and autoimmune disorders." I found the following:

"In an autoimmune response, when memory cells are formed against the “self,” they help mount a highly efficient pathogenic response against the body's own tissues. These memory cells, by virtue of being long lived also become very difficult to eliminate."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4067599/#:~:text=In%20an%20autoimmune%20response%2C%20when,become%20very%20difficult%20to%20eliminate.

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PMR is supposed to "burn itself out" in a year or two which suggests more of an innate immune response. That clearly didn't happen in my case. The longer PMR persists, maybe it becomes an adaptive immune response.

I'm just glad an IL-6 inhibitor seems to stop my PMR symptoms. Unfortunately, my symptoms have returned whenever Actemra was stopped. This might explain why my rheumatologist has no plan to stop Actemra anytime soon. During our discussion about when to stop Actemra was when he made the "immune system memory" comment.

People with RA and other types of inflammatory arthritis don't ever have their biologics stopped unless the biologic stops working. That is usually when their immune systems form antibodies against the biologic.

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Replies to "I don't think they really know what PMR is. Perhaps a combination of autoinflammatory and autoimmune...."

That’s consistent with my experience too. I had a good long stretch of over a year where my RA was well controlled, no flares, no symptoms other than hand weakness, which never improves. I asked my Rheumy whether we should think about reducing dosage or increasing intervals of Remicade and he said emphatically no. “We’ve spent three years managing symptoms and titrating dosage for one year of stability. Don’t change anything for a while”. 🙂
A month later I had a big flare and he put me on 20mg of Prednisone and tapered me down

I have had two biologics fail - Humira because I could not tolerate the dosage of methotrexate required to avoid antibodies to it, and Enbrel failed for reasons unknown.