What to Expect After Kevzara?
In December, if all goes well, I will stop taking the Kevzara that was prescribed by a board certified rheumatologist at Vanderbilt Medical Center 10 months ago. The doctor said I did not need to taper off Kevzara and that "most patients do not have relapses."
Can others help me by describing their own experience ending Kevzara after a year? To taper or not to taper? Relapses or no relapses?
Any reports from those who have stopped Kevzara would be most welcome.
Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.
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I'm on kevzara but I'm one of the unlucky ones who doesn't get enough relief from it. I've seen some posts mentioning just stopping kevzara, while others mentioned stretching out the dosing to 3 weeks first, and then maybe 4 weeks. If kevzara works for you, that is the approach I would want to try. If you stop and then need to restart, is there a build up period again? That's what I would ask your rheumatologist.
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3 ReactionsI would like to know too. I may be going off soon so I would like hear about some others who have stopped Kevzara. I know there isn’t much track record to go on.
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1 ReactionI only have experience with stopping Actemra (tocilizumab). There is no need to taper off IL-6 inhibitors in the same way that Prednisone is tapered. The dose of Kevzara stays the same but some doctors will "stretch the interval" between Kevzara injections from 1 week to 2 weeks and sometimes to 3 or 4 weeks as a trial to see if your symptoms return.
The word "relapse" suggests a sudden return of symptoms when Kevzara is stopped. I didn't have any sudden severe symptoms after stopping Actemra. I had a more gradual return of symptoms over a few months. My inflammation markers also were trending higher so that prompted my rheumatologist to restart Actemra before I had any severe pain.
Both Kevzara and Actemra have a long half-life so they stay in your system for a few weeks after stopping,. This means that your body gradually reduces the amount of Kevzara in your system rather than the medication being eliminated abruptly.
The biggest advantage to being able to stop Kevzara is that there is no adrenal suppression that happens like when we take Prednisone. If you are already off Prednisone than it is likely that your adrenals have already recovered.
You may find the following discussion helpful.
https://connect.mayoclinic.org/discussion/kevzara-tapering/
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6 Reactions@kjoed53
Sorry to hear Kevzara is not working for you. Thank you for your very helpful suggestion about what to ask. Hang in there.
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1 Reaction@caroljeand Hi.
I’m off Kevzara.
And, I’m doing fine.
I began Kevzara mid-Jan. ‘26.
I was on Prednisone 35mg/day.
(I was started on Pred. at 40mg/day in Nov. ‘25.)
I started Kevzara 2 months after PMR diagnosis and after 2 months of Pred.
I took Kevzara for 8 months, 15 injections. The last two injections were 3-weeks apart, instead of 2.
My rheum. then said to stop Kevzara until my white blood cells, absolute neutrophils, and platelet count increased (they were below acceptable per Kevzara guidelines.)
I had tapered down to 0.5mg/day of Pred., so I actually stopped Kevzara before stopping Prednisone.
I stopped the Prednisone 10 days later, after my last Kevzara injection.
My rheum. got Cosentyx approved for me (6 weeks ago) and I can start anytime I feel the need.
But, I’m in no hurry because I feel well enough and better every day. Maybe I don’t need Kevzara or Prednisone anymore. I’m hoping the PMR is over. I’ve tolerated a little PMR shoulders and neck pain but almost no hip pain, and the shoulders and neck pain is fading fast.
I’ve been off of Kevzara for 10 weeks and off of Prednisone for 8 weeks.
We believe (my rheum. and I) that along with PMR I also have Psoriotic Arthritis.
That could explain the itchy scalp and the sore and slightly swollen fingers, and the palm and foot pain that I had (which ceased while I was taking Kevzara) has increased again after stopping Kevzara.
If these annoying symptoms continue to get worse, I’ll start the Cosentyx. I’m hoping that I won’t have to, that they’ll go away, or that they remain tolerable. I’m able to do everything I was doing before PMR. A tad slower, but I’m a year older.
I walked my youngest daughter down the aisle 2 weeks ago (out-of-town, a 5 hour drive each way, I drove) and my body didn’t fail me. It was a busy weekend.
I had a complete bloodwork done last week and my white blood cells, absolute neutrophils, and platelet counts are back in the normal range. So, they were low because of the Kevzara.
I eat right, sleep enough, exercise a lot, and took meds and supplements to counter the Prednisone negative effects. It all seemed to have worked in my favor. I’ve stopped the extra “other meds” too.
Like Dadcue said above, Kevzara stays in your system for a while after being on a maintenance level. How long? I’ve read vastly different time frames, from so-called experts (medical professionals) who should know, ranging from 1 month to 6 months. For me, I think 2-3 months, which is where I am now. Maybe that is why the OP’s (cwbf’s) doctor says that there is no need to taper off of Kevzara. Kevzara apparently tapers itself via half-life length.
My game plan was to use Kevzara to stop Prednisone.
And I did, but I was forced to stop the Kevzara before I had fully tapered off of the Prefnisone. But still, Kevzara helped me get off Pred. faster.
If my blood levels had been better, I would still be on Kevzara, no Pred., and wondering if I should start tapering off of the Kevzara.
I was thinking (and my rheum. let me be help decide my treatment options) that I would taper from 2 week intervals, to 3 week intervals and then change from the 200mg to the 150mg injections at 3 week then 4 week intervals, then stop. And, hope not to have any severe PMR pains return. There don’t seem to be any rules or guideline by the manufacturers or distributors, not really.
I feel that we are the lab rats, so to speak.
It is new territory. I think I have read maybe one person on here that has stopped Kevzara permanently.
I’m looking forward to reading responses from others who have successfully stopped Kevzara permanently and how they went about stopping. Even you caroljeand, when you do. I’m going to celebrate when you do.
I want to add, like kjoed53, I don’t feel that Kevzara completely alleviated the PMR pain for me. Probably 80%-90%. But, I was tapering Prednisone fairly rapidly and my adrenal system was restarting during that timeframe. So that could be why I still felt PMR slightly while I was taking Kevzara. Maybe if I had tapered Pred. slower, the Kevzara would have felt like it was providing 100% pain relief.
Best wishes when you go off.
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3 Reactions@stonewheel Thank you so much for your post. Very helpful. I’ve had PMR for over a year now, so understand the struggle. Peace to you.
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2 Reactions@stonewheel
"I feel that we are the lab rats, so to speak."
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I felt like a "case study" more than a lab rat. There were several doctors interested when I started Actemra, Every doctor had their own ideas about what "should happen." Most of the time what "actually happened" wasn't what any doctor expected. We were "winging it" most of the time and we made things up as we went.
In medicine, individual responses can vary wildly from what research data predicts. In that sense, I felt like I was in uncharted medical territory. It was exciting to me and my doctors. When Prednisone was stopped after so many years it was nothing more than a "leap of faith."
The first time I tapered off prednisone something completely unexpected happened. I had a massive flare of panuveitis a week or two after prednisone was stopped the first time. It was all but forgotten that I had a "history of reactive arthritis with uveitis" because PMR was my primary diagnosis.
https://my.clevelandclinic.org/health/diseases/panuveitis
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I was still on Actemra when my ophththalmologist said Actemra wasn't going to work for uveitis and restarted 60 mg of prednisone again. My rheumatologist said, "Actemra wasn't going to add much of anything to 60 mg of prednisone to treat the uveitis. flare." My rheumatologist stopped Actemra. My ophthalmolgist started Humira for uveitis saying I should have been on Humira a long time ago -- before PMR was diagnosed.
After the uveitis flare happened, I needed 60 mg of Prednisone again. I felt like I was back into charted waters. I knew what I needed to do for uveitis but I didn't know what Humira would do. The uveitis flare was a huge setback but things worked out.
Humira didn't work well for PMR and I got stuck on 15 mg of prednisone again. Humira was stopped when I told my rheumatologist that Actemra worked better for PMR after Humira was stopped After Actemra was restarted, I tapered off Prednisone again for the second time. I was more confident the second time and I felt like I was in chartered waters the second time.
When 60 mg of prednisone was started for uveitis, I was on prednisone for 3 months along with Humira. When I was stuck on 15 mg of prednisone, Actemra was restarted for PMR. From 15 mg, I was back to zero again in about 4 weeks. My endocrinologist gave me her blessing and said my cortisol level was still "adequate."
I haven't had any subsequent flares of uveitis in 6 years after Actemra was restarted. Now my ophthalmologist says Actemra seems to be working for uveitis. My rheumatolgist just wants to know if "anything else" happens but doesn't want to stop Actemra.
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Something else has happened so now an oncologist is involved. My rheumatologist wants me to hold my Actemra infusions until the oncologist weighs in. I found evidence that inhibiting IL-6 might be helping this latest problem but I need to discuss it with the oncologist.
The newest specialist is an oncologist and an endocrinologist. There are only a few doctors in the entire world that specialize in both realms of medicine. They are called neuroendocrine oncologists! It just so happens that there is one of those doctors across the street at the University Hospital where I used to work until I retired. At least I don't have to travel too far and I can still walk if I have to as long as PMR doesn't flare up again while Actemra is being withheld. Parking the car at the University Hospital is the bigger problem.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11480914/
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4 Reactions@stonewheel
25mg prednisone was 90% relief for me, and I was okay with that. Kevzara is probably 50% relief for me, and less by evening if I have an active day. I'm trying to hold out until cosentyx is approved for PMR, but it seems there's more emphasis on limiting vaccines than there is in approving new treatments these days. I'm curious to know what insurance you have that approved cosentyx for you? I have Cigna and I was surprised that kevzara didn't need prior authorization for PMR.
@stonewheel sounds like you are doing great! These positive stories give us hope.
I have my rheumatologist visit this week and am anxious to hear her take on things.
You are so right, we are lab rats! 😌
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1 ReactionYes, “case study” is better terminology.
IL-6, (actually all of the Interlukins) and cytokines and TNFs function and inhibition studies of them both pro- and anti- inflamatory may lead to the controlled regulation of them for various needs. Lots of lab work and human specimens required. We are fascinating creature beings, as are all creatures.
I value all of your shares.
Thank you.
I hope you can get in front of and stay on top of your latest concerns.