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Kevzara

Polymyalgia Rheumatica (PMR) | Last Active: 8 hours ago | Replies (73)

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@dadcue

I would be interested in your opinion about something. Nobody seems to have any solid ideas about something my rheumatologist told me.

My rheumatologist believes that if my autoimmune conditions had been brought under control sooner and not allowed to persist maybe I could get off Actemra. He said at this stage my immune system has developed a long term memory for what it has been attacking for so many years. Apparently my immune system won't forget about what it has been attacking anytime soon. The longer the underlying inflammatory condition is completely stopped, the better my chance of eventually getting off Actemra. He implied Actemra is stopping my immune response much better than Prednisone ever did. Prednisone works quickly but it should only be use in the short term as a bridge to more effective treatment.

The problem with prednisone is that it only decreases the autoimmune response and doesn't stop inflammation completely. When we take prednisone, we still have "chronic inflammation" that recurs every day. Whatever "triggers" an autoimmune condition needs to be stopped quickly and "reset" or otherwise the immune system's propensity to form a long term memory takes hold which results in a need for long term Prednisone. We flare because of immune memory and we can't get off prednisone because of adrenal insufficiency --- double trouble.

He said "deactivating the memory cells" in autoimmune conditions will be the battleground in the future.
https://pmc.ncbi.nlm.nih.gov/articles/PMC4449764/
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I was blown away by all of this! I was led to believe that taking Prednisone and waiting for PMR to "burn itself out" was the way to go. Nothing I can do about it now. In any case, prednisone was the "only option" when I was first diagnosed.

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Replies to "I would be interested in your opinion about something. Nobody seems to have any solid ideas..."

This is all out there at the fringes of my very limited knowledge base I was a student when we didn't even think of decoding the human genome...Immunology was a science fiction type of new frontier. I learn what I can from reading but nything seriously medical is mostly incomprehensible. My rheum is very good at explaining anything I ask but my education on the basics of immunology, the inflammation process, and biologic drugs is laughably inadequate. I read, reflect briefly and stay focused on my mindfulness program, eat healthy, exercise, and do needlework and read. I read less and less on PMR because it doesn't make a difference in my daily life any more.
So while I have seen a few things addressing your questions, I don't want to pass them along . You're on the right track. My answers would be laughably vague.