Mayo Connect is a good resource. There are many people in the USA being started on Kevzara to treat PMR. It isn't being used in other countries that much. Depending on your perspective, we are fortunate.
I had a fantastic response to Actemra (tocilizumab) which is another IL-6 inhibitor similar to Kevzara. After 12 years of Prednisone with many prednisone related complications, my quality of life has improved. I have been off Prednisone for almost 5 years.
My experience might not translate to Kevzara so I look forward to the responses you receive from people who are actually on Kevzara.
The only thing that my rheumatologist said to me before starting Actemra was that I wouldn't know if any biologic medication works or not unless I tried it to see. Also, the response to any biologic isn't immediate. You will still need to taper off Prednisone slowly. It took more than a year to taper off Prednisone after Actemra was started. Some of the time needed to taper off prednisone was because of adrenal insufficiency which was another complication from long term Prednisone use.
I started Kevzara 6 weeks ago and I love it. I was able to drop from 10mg of progesterone to 5 and am now tapering. I often feel like I don't need prednisone at all, but relapse is awful, so I am following doc's orders. Almost immediately, my mind cleared and my shoulder joints/deltoids felt "cool" (I didn't realize they had felt hot until they didn't anymore..) The only negative side effect I notice is that I get heartburn, which I've never had before.
About 3 weeks ago I realized I am now sleeping for 6-7 hours straight through. I've never been a good sleeper and this is a first. It's wonderful.
To be clear, when researching, I looked up what an excess of IL-6 does in the body and realized I had almost all those symptoms, as do a LOT of my relatives on the side of the family I take after.
I have had PMR for at least 30 years and been of and off prednisone (P) , mostly on for that time. My new rheumatologist (last of 5) tried hydrocholoquine. I was on HCQ for three months and had the wildest dreams and sleeping problems. It didn't help my PMR so my rheumatologist switched me to sulfasalazine and after 3 months and no help I was switched to Kevzara. I have been on Kevzara for about 6 months and it seems to be helping. I am down to 2.5 mg of prednisone and hopefully will be down to zero P in the future. I do have blood test now every 3 month and so far everything is OK.
I was on Kevzara for 8 months last year. It did help my symptoms and seemed to prevent flare-ups but it did not allow me to get below 5 mg of prednisone. There were side effects that showed up in labs: high cholesterol and white cells below the normal range. My primary doctor did not think my cholesterol was bad enough to need treatment and the white cells were only slightly low. I had to get off the drug due to cost. About a month after stopping I had a pretty bad flare-up so it had been helping me. Now I'm on Actemra which my insurance is hopefully going to cover!
I have had PMR for at least 30 years and been of and off prednisone (P) , mostly on for that time. My new rheumatologist (last of 5) tried hydrocholoquine. I was on HCQ for three months and had the wildest dreams and sleeping problems. It didn't help my PMR so my rheumatologist switched me to sulfasalazine and after 3 months and no help I was switched to Kevzara. I have been on Kevzara for about 6 months and it seems to be helping. I am down to 2.5 mg of prednisone and hopefully will be down to zero P in the future. I do have blood test now every 3 month and so far everything is OK.
Diagnosed with PMR in 2011. Many flares. Started KEVZARA in December. With prednisone at 10mg/day. I’ve reduced to 0/day now. Twice my wbc has been low. Last few months more infections. Ear/sinus/ cold sores. Will test my wbc again in a couple weeks and see what my rheumatologist says.
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Welcome @catherine71655, You might find these related discussions helpful:
-- Anyone tried Kevzara for PMR?: https://connect.mayoclinic.org/discussion/kevzara-3/
-- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/
-- Starting KEVZARA: Anyone experience side effects?: https://connect.mayoclinic.org/discussion/starting-kevzara/
How long have you had PMR? Are you trying to get off of prednisone?
Mayo Connect is a good resource. There are many people in the USA being started on Kevzara to treat PMR. It isn't being used in other countries that much. Depending on your perspective, we are fortunate.
I had a fantastic response to Actemra (tocilizumab) which is another IL-6 inhibitor similar to Kevzara. After 12 years of Prednisone with many prednisone related complications, my quality of life has improved. I have been off Prednisone for almost 5 years.
My experience might not translate to Kevzara so I look forward to the responses you receive from people who are actually on Kevzara.
The only thing that my rheumatologist said to me before starting Actemra was that I wouldn't know if any biologic medication works or not unless I tried it to see. Also, the response to any biologic isn't immediate. You will still need to taper off Prednisone slowly. It took more than a year to taper off Prednisone after Actemra was started. Some of the time needed to taper off prednisone was because of adrenal insufficiency which was another complication from long term Prednisone use.
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2 ReactionsThank you for your reply. I didn’t know there were other available meds.
The days when it is said that Prednisone is the "only option" for PMR and GCA are rapidly disappearing.
https://www.healio.com/news/rheumatology/20250220/tsunami-of-effortbrings-biologics-to-the-forefront-in-giant-cell-arteritis-pmr
I used to think the USA was slow to adopt new treatments but now that seems to be changing.
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2 ReactionsI started Kevzara 6 weeks ago and I love it. I was able to drop from 10mg of progesterone to 5 and am now tapering. I often feel like I don't need prednisone at all, but relapse is awful, so I am following doc's orders. Almost immediately, my mind cleared and my shoulder joints/deltoids felt "cool" (I didn't realize they had felt hot until they didn't anymore..) The only negative side effect I notice is that I get heartburn, which I've never had before.
About 3 weeks ago I realized I am now sleeping for 6-7 hours straight through. I've never been a good sleeper and this is a first. It's wonderful.
To be clear, when researching, I looked up what an excess of IL-6 does in the body and realized I had almost all those symptoms, as do a LOT of my relatives on the side of the family I take after.
I might have been needing Kevzara my whole life.
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2 ReactionsI have had PMR for at least 30 years and been of and off prednisone (P) , mostly on for that time. My new rheumatologist (last of 5) tried hydrocholoquine. I was on HCQ for three months and had the wildest dreams and sleeping problems. It didn't help my PMR so my rheumatologist switched me to sulfasalazine and after 3 months and no help I was switched to Kevzara. I have been on Kevzara for about 6 months and it seems to be helping. I am down to 2.5 mg of prednisone and hopefully will be down to zero P in the future. I do have blood test now every 3 month and so far everything is OK.
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2 ReactionsI was on Kevzara for 8 months last year. It did help my symptoms and seemed to prevent flare-ups but it did not allow me to get below 5 mg of prednisone. There were side effects that showed up in labs: high cholesterol and white cells below the normal range. My primary doctor did not think my cholesterol was bad enough to need treatment and the white cells were only slightly low. I had to get off the drug due to cost. About a month after stopping I had a pretty bad flare-up so it had been helping me. Now I'm on Actemra which my insurance is hopefully going to cover!
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1 ReactionI had no idea my insurance might not cover it! I’d better check ASAP! Thank you.
Does your health insurance cover it because several had commented that theirs didn’t.
Diagnosed with PMR in 2011. Many flares. Started KEVZARA in December. With prednisone at 10mg/day. I’ve reduced to 0/day now. Twice my wbc has been low. Last few months more infections. Ear/sinus/ cold sores. Will test my wbc again in a couple weeks and see what my rheumatologist says.
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