Kevzara and prednisone effectivness

@stonewheel

The crosstalk and "upstream" and "downstream" reactions of various cytokines gets extremely complex. My understanding is very limited. My rheumatologist says it is all an educated guess for which biologic might work or won't work. All I know is that inflammation pathways are not isolated pathways but more like a network of pathways that are interconnected.

I asked about Cosentyx once. The answer I received was Cosentyx might work because inhibiting IL-17 also decreases IL-6 levels.
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Artificial intelligence blows me aways sometimes but I like how it "simplifies" things to some degree.

"The immune system operates via interconnected signaling cascades rather than isolated pathways. IL-17A normally acts as a powerful stimulant that prompts various cell types (such as fibroblasts, endothelial cells, and keratinocytes) to produce other inflammatory mediators, prominently including IL-6, TNF-α, and chemokines. When Cosentyx targets and neutralizes IL-17A, it effectively disrupts this downstream amplification loop. Multiple clinical studies published on PubMed have confirmed that patients treated with secukinumab show a significant reduction in systemic IL-6 levels, as well as other inflammatory markers like C-reactive protein (CRP)."
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As far a taking more than one biologic is concerned it is a matter of "too much immunosuppression." Even being on prednisone in combination with a biologic can cause this. The problem is that prednisone can't be stopped very easily so the biolgic needs to be stopped.

I will defer to artificial intelligence again:

Over-immunosuppression is a primary concern when combining multiple immunomodulatory therapies, as stacking treatments can significantly elevate the risk of serious infections. Your point regarding prednisone is also clinically spot-on: because long-term prednisone suppresses the body's natural cortisol production, stopping it abruptly can trigger a dangerous adrenal crisis."

@stonewheel

I don't know how soon it will all happen but I'm pretty sure it won't be within my lifetime. The clock is winding down for me. I like a good sports analogy. I'm just stalling and hanging on with a lead because I don't think I will win in overtime.
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It is important to know for sure if you have PMR/GCA. There is no guarantee that people are diagnosed correctly. I had to learn to accept that I had multiple autoimmune problems. Having more than one autoimmune disorder has been an eye opener for me. Actemra worked extremely well for my PMR symptoms, and got me off prednisone for the first time in decades. I think Actemra controlled my inflammation long enough so I could reduce prednisone enough to allow time for my adrenals to recover. My endocrinologist was surprised my adrenals were so resilient.

What I don't say very often is about what happened after the first time I tapered off prednisone. Within a week or two of tapering off prednisone the first time, 60 mg of prednisone was restarted because I had a massive flare of panuveitis. My rheumatologist stopped Actemra because a uveitis specialist insisted that I be started on Humira (adalimumab) which is the only systemic biologic therapy fully FDA-approved to treat non-infectious intermediate, posterior, and panuveitis.
https://my.clevelandclinic.org/health/diseases/panuveitis
------------------------------
There was a lot of discussion between a rheumatolgist, an ophthalmologist, an endocrinologist and my PCP also was involved trying to decide what steps should be taken next. It was very complicated but Humira was started and prednisone was tapered lower after the panuveitis went back into remission. As I tapered my prednisone dose back to 20 mg, all the generalized body pain returned just like a flare of PMR. My endocrinologist said it wasn't be adrenal insufficiency since I was still on 20 mg of prednisone. The pain didn't get any better when I was on Humira and I was stuck on 20 mg of prednisone again.

My rheumatologist and I had a long discussion. He said it would be impossible to "adequately treat" all my autoimmune conditions with a single biologic. I was allowed pick between Actemra or Humira but not both. It seemed like if I chose Humira, I would need to remain on prednisone. I picked Actemra to the chagrin of the uveitis specialist who said it was only a matter of time until uveitis flared up again. So far, that hasn't happened and it has been 5 years since then.

My PMR pain stopped rather quickly after Actemra was restarted. From 20 mg of prednisone, I was more confident that Actemra would work the second time. I was in a hurry to get off prednisone again so I went from 20 mg back to 3 mg in just a few days so my adrenals would not be suppressed for very long. The taper I did made a mockery of tapering slowly off prednisone for PMR. My cortisol level was rechecked at 3 mg and it was still adequate so prednisone was stopped the second time.

I don't know what to make of all this except that I wish I was started on an IL-6 inhibitor sooner. I regret having been on prednisone for 12 years when adrenal supression became a big problem for me. I think people need to get off prednisone as soon as possible so their adrenal function isn't suppressed for very long.

I don't know what will eventually replace prednisone as the primary treatment for PMR/GCA but something needs to. This perspective reflects a major, ongoing shift in how the medical community approaches these inflammatory conditions according to my rheumatologist. He says the other problem is that patients are being encouraged by other patient to take prednisone forever so that needs to change to.
--------------------------------
Prednisone is cheap but the costs associated with long term use causes expensive health problems.
https://www.steritas.com/insights/the-not-so-hidden-costs-of-steroid-toxicity

@dadcue Hugs.
I agree.
Prednisone is a realistic tool for diagnosis (I’m not a doctor) and to swiftly stop the pain. But the time period between starting the prednisone and starting the biologic needs to be a shorter window. So long term prednisone isn’t necessary. The length of time that it takes for the biologics to build up is the hurdle.

@stonewheel

All true ... but it hardly took me any time to taper off prednisone after Actemra was started. Only 12 months to taper off prednisone after Actemra was started. No comparison to the 12 years I tried to slowly taper off Prednisone without Actemra. Granted ... not everyone will have the same result but the percentage of people who do manage to taper off prednisone with a biologic represents a lot of people. Probably the same number of people who are said to need prednisone for more than 5 years to promote long term prednisone use.

It was more insulting when an endocrinologist told me 3 mg was such a small dose that I didn't need to taper as long as my cortisol level stayed within the normal range. She seemed to think as long as nothing too stressful happened I would not have an adrenal crisis. The only reassurance she provided was that I could restart prednisone for any reason if I felt the need.

The endocrinologist then asked me if I still needed prednisone for PMR. I didn't know so she checked with my rheumatolgist. All the while, the "experts" on another PMR forum were telling me it would be better if I stayed on prednisone for the rest of my life but they were clueless too.

@dadcue none of them have a real answer, it's a guessing game. Try it and see if it works. I was down to 0 several times es over 8 years, but always reverted. I've been off for 2 months now and hoping that I never go back. 80% with kevzara will have to do, unless I complain, then she was talking about rinvoq, nit to sure I want to try that one.

@stonewheel

I don't know how soon it will all happen but I'm pretty sure it won't be within my lifetime. The clock is winding down for me. I like a good sports analogy. I'm just stalling and hanging on with a lead because I don't think I will win in overtime.
--------------------------------
It is important to know for sure if you have PMR/GCA. There is no guarantee that people are diagnosed correctly. I had to learn to accept that I had multiple autoimmune problems. Having more than one autoimmune disorder has been an eye opener for me. Actemra worked extremely well for my PMR symptoms, and got me off prednisone for the first time in decades. I think Actemra controlled my inflammation long enough so I could reduce prednisone enough to allow time for my adrenals to recover. My endocrinologist was surprised my adrenals were so resilient.

What I don't say very often is about what happened after the first time I tapered off prednisone. Within a week or two of tapering off prednisone the first time, 60 mg of prednisone was restarted because I had a massive flare of panuveitis. My rheumatologist stopped Actemra because a uveitis specialist insisted that I be started on Humira (adalimumab) which is the only systemic biologic therapy fully FDA-approved to treat non-infectious intermediate, posterior, and panuveitis.
https://my.clevelandclinic.org/health/diseases/panuveitis
------------------------------
There was a lot of discussion between a rheumatolgist, an ophthalmologist, an endocrinologist and my PCP also was involved trying to decide what steps should be taken next. It was very complicated but Humira was started and prednisone was tapered lower after the panuveitis went back into remission. As I tapered my prednisone dose back to 20 mg, all the generalized body pain returned just like a flare of PMR. My endocrinologist said it wasn't be adrenal insufficiency since I was still on 20 mg of prednisone. The pain didn't get any better when I was on Humira and I was stuck on 20 mg of prednisone again.

My rheumatologist and I had a long discussion. He said it would be impossible to "adequately treat" all my autoimmune conditions with a single biologic. I was allowed pick between Actemra or Humira but not both. It seemed like if I chose Humira, I would need to remain on prednisone. I picked Actemra to the chagrin of the uveitis specialist who said it was only a matter of time until uveitis flared up again. So far, that hasn't happened and it has been 5 years since then.

My PMR pain stopped rather quickly after Actemra was restarted. From 20 mg of prednisone, I was more confident that Actemra would work the second time. I was in a hurry to get off prednisone again so I went from 20 mg back to 3 mg in just a few days so my adrenals would not be suppressed for very long. The taper I did made a mockery of tapering slowly off prednisone for PMR. My cortisol level was rechecked at 3 mg and it was still adequate so prednisone was stopped the second time.

I don't know what to make of all this except that I wish I was started on an IL-6 inhibitor sooner. I regret having been on prednisone for 12 years when adrenal supression became a big problem for me. I think people need to get off prednisone as soon as possible so their adrenal function isn't suppressed for very long.

I don't know what will eventually replace prednisone as the primary treatment for PMR/GCA but something needs to. This perspective reflects a major, ongoing shift in how the medical community approaches these inflammatory conditions according to my rheumatologist. He says the other problem is that patients are being encouraged by other patient to take prednisone forever so that needs to change to.
--------------------------------
Prednisone is cheap but the costs associated with long term use causes expensive health problems.
https://www.steritas.com/insights/the-not-so-hidden-costs-of-steroid-toxicity

@dadcue I’m perplexed as to why Prednisone is “still” not FDA approved for PMR. Why?
Kevzara was in 2017, but the trial for GCA was halted.
Actemra was for GCA, but no trial for PMR that I have found.
Both are similar (IL-6) Inhibitors, with a slight chemical

It’s Wac-a-mole medicine!.!.!!.!!!.!..!!.!!!

The name PMR,
Polymyalgic Rheumatica, is a misnomer at best.
Many muscles pain caused by discharge and build-up of one or more of the bodily fluids “humors” (flux).

@stonewheel

I don't know how soon it will all happen but I'm pretty sure it won't be within my lifetime. The clock is winding down for me. I like a good sports analogy. I'm just stalling and hanging on with a lead because I don't think I will win in overtime.
--------------------------------
It is important to know for sure if you have PMR/GCA. There is no guarantee that people are diagnosed correctly. I had to learn to accept that I had multiple autoimmune problems. Having more than one autoimmune disorder has been an eye opener for me. Actemra worked extremely well for my PMR symptoms, and got me off prednisone for the first time in decades. I think Actemra controlled my inflammation long enough so I could reduce prednisone enough to allow time for my adrenals to recover. My endocrinologist was surprised my adrenals were so resilient.

What I don't say very often is about what happened after the first time I tapered off prednisone. Within a week or two of tapering off prednisone the first time, 60 mg of prednisone was restarted because I had a massive flare of panuveitis. My rheumatologist stopped Actemra because a uveitis specialist insisted that I be started on Humira (adalimumab) which is the only systemic biologic therapy fully FDA-approved to treat non-infectious intermediate, posterior, and panuveitis.
https://my.clevelandclinic.org/health/diseases/panuveitis
------------------------------
There was a lot of discussion between a rheumatolgist, an ophthalmologist, an endocrinologist and my PCP also was involved trying to decide what steps should be taken next. It was very complicated but Humira was started and prednisone was tapered lower after the panuveitis went back into remission. As I tapered my prednisone dose back to 20 mg, all the generalized body pain returned just like a flare of PMR. My endocrinologist said it wasn't be adrenal insufficiency since I was still on 20 mg of prednisone. The pain didn't get any better when I was on Humira and I was stuck on 20 mg of prednisone again.

My rheumatologist and I had a long discussion. He said it would be impossible to "adequately treat" all my autoimmune conditions with a single biologic. I was allowed pick between Actemra or Humira but not both. It seemed like if I chose Humira, I would need to remain on prednisone. I picked Actemra to the chagrin of the uveitis specialist who said it was only a matter of time until uveitis flared up again. So far, that hasn't happened and it has been 5 years since then.

My PMR pain stopped rather quickly after Actemra was restarted. From 20 mg of prednisone, I was more confident that Actemra would work the second time. I was in a hurry to get off prednisone again so I went from 20 mg back to 3 mg in just a few days so my adrenals would not be suppressed for very long. The taper I did made a mockery of tapering slowly off prednisone for PMR. My cortisol level was rechecked at 3 mg and it was still adequate so prednisone was stopped the second time.

I don't know what to make of all this except that I wish I was started on an IL-6 inhibitor sooner. I regret having been on prednisone for 12 years when adrenal supression became a big problem for me. I think people need to get off prednisone as soon as possible so their adrenal function isn't suppressed for very long.

I don't know what will eventually replace prednisone as the primary treatment for PMR/GCA but something needs to. This perspective reflects a major, ongoing shift in how the medical community approaches these inflammatory conditions according to my rheumatologist. He says the other problem is that patients are being encouraged by other patient to take prednisone forever so that needs to change to.
--------------------------------
Prednisone is cheap but the costs associated with long term use causes expensive health problems.
https://www.steritas.com/insights/the-not-so-hidden-costs-of-steroid-toxicity

@stonewheel

Prednisone is an old medication and was used for PMR before the FDA required rigorous testing---it was more or less grandfathered in and given a pass as a treatment for PMR

Kevzara was FDA approved for RA in 2017. Trials were underway to get it approved for GCA but enrollment was interrupted because of Covid. Results of the Phase 3 SAPHYR clinical trial met the criteria for the FDA to approve Kevzara for PMR in 2023.

Actemra was never studied to treat PMR because its patent expired. Now we have generics that compete with Actemra. When a patent expires on a medication there isn't much financial incentive to do expensive clinical trials.

The GIACTA study for Actemra to treat GCA was in 2017 when the FDA approved it for GCA. I remember how excited my rheumatologist was in 2018 to offer me Actemra. I had refractory PMR without GCA with no hope of ever tapering off Prednisone. My rheumatologist didn't know Actemra would work for me --- it was just a hunch that Actemra should work for me.

My rheumatologist wanted to know if I would be willing to try Actemra if he could get it approved for me. I asked another doctor what the chances were that Actemra would be approved and he said -- no chance it would ever be approved so I didn't think it mattered that I agreed to try it.

I inquired about Actemra on another PMR forum. I was surprised by all the negative feedback I received even though nobody had any personal experiences to share. It was all about how great prednisone was and how bad Actemra would be. I knew prednisone wasn't that good!

When Actemra was approved I almost refused it but I felt I had made a commitment to try it. I told my rheumatolgist about the negative comments about Actemra. His famous words were, "I wouldn't know if I didn't try it to see." It made perfect sense for me to try Actemra rather than listen to someone who didn't know anything about it.

At the time, I was under the impression that I would be getting a monthly infusion. My rheumatologist started to explain some details about the GIACTA study. Then he said he decided to start me out with injections. The scary part was when he told me to do injections every two weeks instead of weekly to "play it safe!"