How does Kevzara help with PMR symptoms and pain? I am being weaned

I was diagnosed with PMR about 17 years ago. I took prednisone for 13 out of those 17 years. My rheumatologist wanted me to try a biologic similar to Kevzara. My rheumatologist didn't want me to take prednisone for the rest of my life and described the biologic as my "best chance" of ever getting off prednisone.

The biologic came with "no guarantee" that it would work. My rheumatologist just felt it was "worth a try" and I wouldn't know if it would work unless I tried it.

The biologic offered to me was called Actemra. It shares the same classification as Kevzara. Both medications are IL-6 receptor blockers, IL-6 is the pro-inflammation cytokine implicated in both PMR and GCA. When IL-6 levels are too high we have too much of the inflammation that results in PMR and/or GCA.

Both Actemra and Kevzara are large molecules that attach to IL-6 receptor sites in cells instead of the IL-6 cytokine. Somehow that allows inflammation to decrease and we feel less pain. Nobody knows precisely how these medications work. Both Actemra and Kevzara should work in the same way. They don't work immediately like prednisone does but after 3 months or so you should start to feel the difference.

Actema is FDA approved for GCA.

Kezvara was recently FDA approved for PMR

Both biologics were approved for the treatment of rheumatoid arthritis about 10 years ago but have since been approved to treat other types of autoimmune conditions.

Actemra worked for me. I was off prednisone a year after it was started. Technically, I still have PMR without the pain that PMR caused and the side effects that prednisone caused.

My rheumatologist thinks I'm better off being on Actemra instead of prednisone. I agree with my rheumatologist because I feel much better now than I ever did when I took prednisone for years and years.

I don't have any personal experience with Kevzara but it should work the same way that Actemra works.
https://www.actemra.com/gca/considerations/how-it-works.html#:~:text=When%20your%20body%20produces%20too,to%20attack%20your%20healthy%20cells.
I personally haven't had any serious side effects from Actemra. There are potential side effects. I think the side effect profile for both Kevzara and Actemra are similar.

My rheumatologist would say the risk of side effects from Actemra is less than the side effects from long term prednisone use. However, he also said that if I only needed a relatively small dose of prednisone for a relatively short period of time then prednisone might be better.

Thank you for the information. It took about 6 months for me to find a doctor that was able to accurately diagnose me. That was a very frustrating time as well as being very painful.
I can’t hardly remember what normal felt like.
My doctors have had me yo yoing with prednisone dosage I am waiting for
my insurance to approve it and then will gladly try it. I have gained 35 pounds while on prednisone and need to lose this weight.

I’m glad for your help.

@tsharkey01 please take a look at the slides in this web site : https://www.pmrandil6.com/. Go tot he far right under Resources and there are two videos :

I’m Dr. John Stone. rheumatologist and a Professor of Medicine in Boston, Massachusetts. discusses PMR management
AND
Understanding PMR Pathophysiology: An Expert's Perspective. Dr Leonard Calabrese.
Welcome to ReachMD. This medical industry feature, titled “Understanding PMR Pathophysiology: An Expert's Perspective” is sponsored by Sanofi Genzyme and Regeneron Pharmaceuticals.

Thanks 😊 I have taken 2 doses of kevzara now and seen no improvement so far. I actually had a flare at the beginning of the month when I was tapering my prednisone. I increased my prednisone back to 15. It’s all just a wait and see it seems.

I only have my experience with Actemra but Kevzara should work roughly the same if it is going to work.

It might take 3 months for you to know if a biologic is working or not according to my rheumatologist. I tapered by 1 mg per month for the first 3 months after starting Actemra. I may have been too cautious but that was how I tapered at first. Nobody gave me instructions other than "try to taper off prednisone."

I started with Actemra injections every two weeks the first time I tapered off.

I expected another failed attempt to taper off during the first 3 months while I tapered by 1 mg per month. I was surprised that I didn't have to increase my prednisone dose.

I switched to a 1 mg per week taper mostly just to see if I could taper faster or not. I was still expecting to have a flare at any time. When I reached 3 mg of prednisone, I wasn't sure what to do so I asked my rheumatologist. I was told to stop my taper until I could be evaluated by an endocrinologist. I stayed on 3 mg of prednisone for a couple of months.

The endocrinologist was concerned about my low cortisol level but said she expected it to be low given I had taken prednisone for 12 years. She was optimistic that I had a measurable cortisol level even though it was low.

I stayed on 3 mg of prednisone until my endocrinologist said my cortisol level was "adequate" and that it "might be safe" to discontinue prednisone.

I went from 3 mg to zero in a couple weeks without any real tapering plan. It was more like "testing the water" before "taking a leap of faith." My endocrinologist reassured me that I could take prednisone again if I needed to.

I had a need to take prednisone again but only temporarily. The second time I tapered off was much easier. I went from 15 mg to zero in 3 months the second time after my Actemra injections were increased to weekly.

I have been off prednisone for nearly 4 years. My rheumatologist thinks I'm better off being on Actemra. I currently do a monthly infusion rather than the injections.

This is a super-helpful story, dadcue. Thanks for sharing it.

I have been on pred for 3-1/4 years now, the last year or so at around 3 mg/day after starting at 20. Even 2.5 led to morning ache in ribs front and back.

I just figure the last few mg will be verrrrry slow, if I can ever get off it (my rheum said 3 mg is close to biological levels, i.e., what the adrenals normally produce, so I might be on it indefinitely (forever?).)

I tested at osteopenia levels (pre-osteoporosis) from my bone scan, so it ain't a great plan to stay on it indefinitely. Guess I need to try reducing again.

Very glad to hear you were able to get off it entirely, that the second time was easier, and mostly that there are ways to "assist" in tapering the last few mg. I need to talk w/my rheum about that.

I’ve just started on Kevzara this week. Also taking MTX 17.5 mg weekly and currently on Pred 8mg with continued slow taper. I’ve had PMR for 16 months now and praying this biological will be the catalyst to the end of Prednisone and PMR.

I hope Kevzara works for you.

Don’t expect any overnight changes in your condition or prednisone dose. My rheumatologist said it often takes a few months to notice a difference.

If you have been on prednisone for more than a year, your adrenals might not be ready to produce cortisol anytime soon.

Did your doctor tell you what to expect after starting Kevzara? You still need to taper slowly but hopefully things go smoothly for you.

With some luck you might be able to stop MTX too.

I am so grateful to find this meeting place. I don't know anyone with PMR and has never heard of it until I was diagnosed 7 months ago. I have been o Prednisone ever since and my rheumatologist is having me taper slowly (current dose is 7 mg). I recently had Covid and after that the second of two upper respiratory infections. I have the sense that I am depleted, that my Qi is being drained by the steroid, even as it helps the pain and I don't even know what to do about the fatigue. Just reading what others are going through and have found effective relieves my sense of anxiety and depression....as in.."will I ever get of Prednisone? Will I ever feel better again?" I am hoping the answer to those questions is YES and I also have gleaned that it's not going to be right away. Thank you all for your wisdom💗