Kevzara

I felt like a pioneer 6 years ago when Actemra was tried. Even though biolgics have been around longer for the treatment of other autoimmune disorders, there aren't many people with PMR/GCA being treated with IL-6 inhibitors. Kevzara is newer than Actemra but Kevzara isn't that new for treating RA and other disorders.
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"The only reason I'm anticipated to have difficulty getting off Kevzara is if my PMR doesn't go into remission."

This is my dilemma at the moment. Now my doctors are making comments in my medical records that I never want to stop taking Actemra. I said that but in the context of not wanting to go back to the pain and needing Prednisone again. I seem to be in remission as long as I stay on Actemra.

Whether or not "lifelong Actemra" is any better than lifelong Prednisone -- I don't know. My rheumatologist seems to think so. For other autoimmune disorders, these biologics are used for as long as they continue to work. I worry more about what happens if Actemra stops working.

It is reassuring to know that Actemra can be stopped anytime but my rheumatologist doesn't want me to have to be on long term Prednisone again. He is already talking about other biologics that might work if Actemra stops working.

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.

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.

A friend with psoriasis arthritis has been working g her way thru biologics , each until it's not longer effective, for 20 years now. And no evidence of long term damage from the PA or the biologic. As long as they keep developing new biologics, she's good.

Yes, I had difficulty getting my insurance to cover upon first request. We appealed and they approved. Health Insurers deny around 850 million claims per year, according to health policy non profit KFF. Less than 1% appeal, but a large number who do are accepted. My rheumatologist handled the paperwork.

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.

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.

Yes, I was very fortunate. Kevzara was US FDA approved the month of my first rheum appointment. My rheum, internal medicine, and endocrinology practices are all within one large practice, affiliated with a medical school. So everyone had a running start when it came to Kevzara. The rheums had their plan and tinelines ready tho.my Internal Med Dr had told me they get folks off Pred within 2 yrs when he referred me, about 6 months prior. Also my rheumatologist is a geriatric rheumatologist, so I've had many times to appreciate that little added bit of his training. He knows more about aging than I do, LOL.

I've owned Australian Shepards for many years.