KEVZARA approved 9/29, side effects or positive info?

You are asking a very complicated question about whether a high IL-6 level means anything and is justification for starting Kevzara. I'm on an IL-6 inhibitor (Actemra) and I have never had my IL-6 level checked. My understanding is that IL-6 levels can be high for many reasons. However, IL-6 levels aren't treated in isolation meaning you aren't treating your IL-6 lab value. What you are treating is the underlying inflammatory condition which causes your IL-6 level to be chronically elevated which is PMR?

The real question is how certain your doctor is that your underlying inflammatory condition warrants treatment with Kevzara. The other question is whether it is "better" being on Kevzara instead of prednisone. When I started Actemra, my doctor was "reasonably certain" my condition would respond to Actemra and it was my "best chance" of ever getting off Prednisone.

The following is what artificial interigence says about the subject. I would agree with what it says.

The True Role of IL-6 Testing
An IL-6 blood test is rarely used to diagnose or manage PMR. IL-6 can spike due to a mild infection, metabolic stress, or generic tissue inflammation. Instead, doctors rely on standard markers like C-reactive protein (CRP) and Erythrocyte Sedimentation Rate (ESR), alongside physical symptoms (like profound shoulder and hip stiffness), to gauge the disease. An isolated high IL-6 level by itself is not standard justification to start a biologic like Kevzara.
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I think this is why we need to trust our doctors to make these medical decisions. I remember how afraid I was to try Actemra. People were saying things like the following: "Better the devil we know" meaning prednisone than a "devil we don't know" meaning Actemra or another biologic like Kevzara. I almost decided against trying Actemra until my rheumatologist said, "I wouldn't know if Actemra worked or not unless I tried it to see." That made more sense to me than fearing the unknown. It turned out that Actemra wasn't a devil at all.

I have no regrets about trying Actemra. I had some mild side effects from Actemra but nowhere near as bad as the side effects I had from prednisone. I have been completely off Prednisone for 5 years. I'm now being treated for PMR with Actemra instead of Prednisone. My quality of life is now much better than it was when I took prednisone for 12 years. I don't know what I would have done if Actemra didn't work or didn't allow me to taper off prednisone.

I will let someone who has experience with Kevzara to tell you what their experience has been. If you try Kevzara I will look forward to reading what your experience is. I hope all goes well with whatever you decide.

Kevzara was my savior. I fought like crazy nor to take it….my dr neglected to tell me it”helps you get OFF PREDNISONE “. IT DID.
I,was at abt. 8mg prednisone when I started Kevzara with the standard protocol of 1 pen self-injection every 2 weeks.
Kevzara takes up to 3 months to kick in. For me I was fully tapered off prednisone as my 3 months on Kevzara was reached,
No side effects, an “occasional” red mark at the injection site. They left within the two weeks and never occurred after a few. I followed the instructions. Rotated the injection site around my belly button.
Good luck. I agree with Mike, best to try.
Note: I have no other health issues and no other drugs. 80yo female.

@tweetypie13
Correction above…..first line
“ fought like crazy NOT to take it”

@dadcue
Thanks so much, again for your help. Yes, I have confirmed PMR (blood tests CRP and ESR, as well as color doppler Ultrasound that confirmed the shoulder bursitis type as well as other PMR things and also confirmed that I didn't have GCA at that time at least). Diagnosed 7/31/26 started 15mg Prednisone that evening. Then went up to 20, then 25mg to get all pain and symptoms under control.
The only reason I brought up the IL6 positive was that I had read some time ago that it often can help in determining possibility of PMR relapse. My Rheumatologist is concerned that I might have flares while tapering off Prednisone and that's why she wants me to take Prednisone. I understand it makes about 6-8 weeks (?) To build up in our system enough to help the pain so that you can either taper faster (or does Kevzara make it possible that you can just stop Prednisone whatever dose you're at if you've been on it long enough?).
I just sent several questions to my Rheumatologist through our medical portal. One is to ask if I can wait until Jan 1 due to the cost to me this year (1200.00 left on my RX deductible).
Next year Humana RX out of pocket is $2400.00. So that's all I'd pay for all RXs next yr.
I also asked her what the dose per month is right now, and would my taper continue as it is now, and then when start Kevzara does it also stay same. Thank you for any and all information because it all helps and I learn from it. I've learned so much from you Mike and so many others. Any other input appreciated. Thans again. Blessings.

@boomermeg

You need advice from dr with these questions.
We are not Drs.

@boomermeg

My very first dose of Actemra was January 1st, 2019. I didn't start on New Years Day for financial reasons because Actemra doesn't cost me anything. A new year seemed like the best time to try something new. It is a shame that biologics are so expensive.

My rheumatolgist had to get authorization to give Actemra to me. It took some doing but it was approved as an exception. I think it was a "compassionate use" authorization since Actemra isn't FDA approved for PMR. The stipulation was that I be treated with the protocols used for GCA patients even though I don't have GCA. I have other autoimmune conditions besides PMR but not GCA.

I was worried the authorization would be revoked during Covid when Actemra had to be stopped for a while. My rheumatologist reassured me the authorization was good for as long as Actemra worked for me. My rheumatologist has no reason to discontinue Actemra and doesn't have any plan to stop Actemra. I think there is some educational value from me being on Actemra. Some of my rheumatology visits attract several rheumatologists who are being trained. I'm not enrolled in any research study but I'm included in the discussions the doctors have.

I'm happy for anyone who is offered an IL-6 inhibitor for PMR. It might not work for everyone but there are many people who now report positive results. It is important to stay positive even when things seem like they will never improve.

You are right ... Kevzara does take some time to work. I didn't really know for sure if Actemra was working until I was able to taper off Prednisone. I told myself Actemra was controlling PMR. When something hurt my rheumatologist wanted to know about it. It was easier to separate PMR from other things that hurt when Actemra controlled PMR.

@dadcue Thank you Mike for sharing this. It gives me hope that it might work too.
I do try to stay positive even when it was at it's worst & I still didn't know what it was and it had gotten so old I some days felt like I didn't know how much more I could take. I guess it's from having been through so much physically already. You learn that eventually it will get better. May not he how we'd like things to be, but usually will end up better than they were.
You're lucky you don't have to pay for it. But, if it'll get me off Prednisone faster, I guess it'll be worth it.
Prednisone is very hard on the body. I can tell just since 7/31. It's great you're the "teaching patient " Mike. I'm sure it's helpful and if they learn something it might help the next patient. Really glad you're off Prednisone and I hope you're doing well. You're most helpful and sharing your experience gives us all information we can learn from.
Thank you again. Blessings.

@tweetypie13
Thanks. Yes I messaged my Dr earlier today. There is plenty to be learned from others experience here. It's helped me a lot to hear what other people's experience has been. Doctors aren't usually the ones taking the RXs they prescribe so it's the patients that can speak to how it affected them. It's individual for each of us of course, but still helpful for myself to hear about it. I hope you're doing well. Blessings.

I'm getting ready to take my 6th injection of kevzara tomorrow. I was quite happy on prednisone until I received my SMM diagnosis and had to taper down quickly. I'm still waiting for the kevzara to reach full effect, I hope. I'm only on 0.5mg prednisone now and I'm experiencing mild to moderate PMR pain. I have a small bump (not painful) at the injection site for about an hour after each injection but no side effects from kevzara that I can tell.