Stopping Kevzara

I moved to every 3 wks, because of blood work. Numbers improved, was 11 months on Kevzara and 6+ weeks at 3 wk intervals. Note no other medical issues. Stopped Kevzara. Sadly, 2 months later CRP was up, so restarted Kevzara.
Again, started because of numbers….not pain. Dont know where this is going.

Thank you for replying tweetiepie13.
I appreciate your sharing. You know that I wish you the very best.
Did you stop Kevzara cold turkey? Or, did you do any kind of taper off, other than the three week interval that you had already established?
If you don’t mind my asking, how high were your CRP numbers? Were you convinced that pain was coming?
Did your rheumatologist recommend that you get back on Kevzara?
What plan has your rheumatologist shared about stopping Kevzara next time?

Do you use an AI engine? I would start with asking an AI engine what the protocol is for going off Kevzara based on your Dx, then if your detail questions are not addressed, ask them individually. This would give you the base line information on what is a standard protocol.

Asking on Mayo Connect gives you random individual experiences, not bad, just hard sometimes to draw conclusions based on a few random data points. I suspect every patient is different in terms of actual experiences, just like patients on prednisone.

I was on Tyenne and had too many side effects so that was stopped. We are now looking at Kevzara. I am not sure if I want to take that ride. Currently I'm on 8mg of prednisone so my steroid load is not that high above normal cortisol release. Both bio-logics are IL-6 inhibitors and that does a lot of what prednisone does. You are trading one drug for another. My understanding is coming off a bio-logic is based on your individual pain and lab numbers. No different than coming off prednisone is an individual sport and timeline.

My only experience was with stopping Actemra. It was cold turkey because of a supply chain problem during Covid. There was no Actemra available so I didn't have any Actemra to take for about 6 months. I didn't have a sudden flare. My inflammation markers and pain level increased gradually over a couple of months so 15 mg of prednisone was restarted.

There are no established protocols for stopping either Kevzara ore Actemra that I know of . Doctors sometimes stretch the time between injections and monitor for a return of symptoms. I do a monthly Actemra infusion so the time between my infusions can be adjusted. My infusion dose can also be adjusted. I have done a couple of informal trials with decreasing my dose and seeing how long I could go without an infusion of Actemra. The longest period of time was 7 weeks without an infusion with the lowest recommended dose. I didn't have more pain but my inflammation markers were trending upward.

I think being able to quickly stop Kevara or Actemra has some advantages compared to prednisone. If a person has a side effect or some other reason to stop these biologics , they are easy to stop. Both medications have a relatively long half-life so they will stay be in your system for a couple of weeks and gradually wear off on their own The main reason why we need to taper off prednisone over many months is because prednisone causes adrenal suppression and neither Actemra or Kevzara suppress adrenal function. Just missing a daily dose of prednisone can cause a relapse or worse . Although an adrenal crisis is rare, the risk is there and nobody wants to take the chance.

This is what artificial intelligence says:

"Abruptly stopping the IL-6 inhibitors Kevzara or Actemra is generally considered safe from a physiological standpoint because, unlike prednisone, they do not cause adrenal suppression. While these biologics have long half-lives that ensure a gradual exit from the system, prednisone requires a strictly managed taper to prevent a potentially life-threatening adrenal crisis."
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Adrenal suppression and not being able to easily stop prednisone is a drawback. The risk of adrenal suppression is high if you take 5mg or more daily for more than 3 to 4 weeks. Adrenal recovery can take months. You probably won't be aware that adrenal suppression has happened until you discover you have a problem after you taper down to 7 mg or so. Other than increasing your prednisone dose and trying a slower taper ... there isn't much else you can do.

I think worth emphasizing that IL-6 inhibitors such as Kevzara work in a way that is completely different than prednisone, which is why they can be taken at the same time. This broadens treatment options.

Prednisone, and the adrenal cortisol it is replacing, are steroid hormones. Which as we all experience are pretty darn effective at controlling inflammation. But at a high potential cost of weakening bones, tendons, etc. (I had three quad tendons detached in my left leg after my first go-round with PMR, which I attribute in part to prednisone weakening of tendons. This was not fun.)

IL-6 inhibitors, on the other hand, work on cytokines. As Wikipedia succinctly explains, "Cytokines are crucial for fighting off infections and in other immune responses. However, they can become dysregulated and pathological in inflammation, trauma, sepsis, and hemorrhagic stroke."

Which is why docs want to make sure you're fully immunized when taking IL-6 inhibitors in place of prednisone.

I'm in the process of getting off my latest doses of prednisone and on Kevzara. It's working for me.

And docs, in my experience, simply don't take the time to explain this stuff in any way that makes sense. Fortunately, we have lots of resources these days, which is why I enjoy this forum for sharing.

Just food for thought.

Barry