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My understanding is that the biologic blocks the effects of the disease while being given but is not a treatment or cure in the usual sense of a drug that directly attacks and terminates the disease process. Thus, we're all in an illustration "remission" while we're on it. I've been told to eventually expect occasions when I'll stop taking it so we can get accurate inflammation markers labs and clinically assess. And yes, long term Kevzara is far preferred over Prednisone from a risk benefit calculation.
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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.
I was first diagnosed with PMR June 2023. I was treated with predisone for 9 mos before starting Kevzara. I am in the "illusory" phase of remission of my PMR while on Kevzara. I've been on it since March 2024 while on Predisone and was able to taper off of the Pred. July 2024. So I've been on Kevzara alone since then(7 mos) . No side effects, and have been mostly symptom free. All of my labs have been normal and I have actually stretched my dosage to every three weeks instead of every two weeks. I've done this in anticipation of coming off of it altogether mostly because of the expense. The drug company said I no longer qualify for their assistance program even though nothing has changed on my end. My rheumatologist says that it's the Kevzara that has kept me in remission and we won't know if it's a real remission until I come off of it. I have enough medication to get me through May and then it's cold turkey for me. Has anyone else discontinued Kevzara after being on it? And if so what was your experience.?
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Illusory not illustrated.