Prednisone for over a year along with Kevzara for last 5 months

Posted by marielynn @marielynn, May 16 2:51pm

Hello,
I have had Rheumatoid Arthritis since I was 28 and I am now 54. I was diagnosed with PMR over a year ago and have been on Prednisone since that time. I started Kevzara about 5 months ago and I am down from 15 mg of Prednisone to 8 mg. I don't feel like I am getting any better. I eat healthy and I am still working out when I can. The prednisone does help until about 6 pm and then the pain in my shoulders, neck and chest comes back. I find it hard to get comfortable at night because I hurt. I have been taking a Naproxen around 7 pm and along with a muscle relaxer. I have tried acupuncture and was sent to physical therapy. I have been on Plaquenil, Methotrexate, Humira, Enbrel, and now Kevzara. I really want to get off the prednisone, but I don't think I can function without it. I am thinking about going to a Integrative & Functional medicine doctor and I am wondering if anyone has done this and has it helped?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@dadcue

I never had my IL-6 level checked. However, I'm taking a medication that inhibits the IL-6 cytokine and stopped my chronic inflammation and relieved my pain after 12 years of PMR treated with Prednisone. . I assume my IL-6 level was elevated but now it is reduced by the biologic I take that inhibits the IL-6 cytokine.

Actually the biologic probably caused my IL-6 level to rise rapidly at first before my IL-6 level returned to normal.

Nobody knows exactly how IL-6 inhibition works but it seems to stop my PMR symptoms and allowed me to taper off prednisone.

A theoretical diagram of how Actemra (tocilizumab) works is seen in the following link.
https://www.researchgate.net/figure/Mechanism-of-action-of-tocilizumab-in-RA-bathtub-theory_fig2_221967570
I'm proud to say it only took me a few weeks to understand this diagram. I don't know why my IL-6 level wasn't checked first before starting Actemra.

The same mechanism should be applicable to Kevzara. Here is another great link that I won't take credit for because someone else posted it first.
https://www.pmrandil6.com/il-6-and-pmr/

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Thank you.

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In reply to @suetex "Thank you." + (show)
@suetex

Thank you.

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Here were the tests ran by my Rhumy. Medicare covered the costs. I would have to try and go back 2 years to see what the results were. I dont remember. He also ran a PET scan which was also covered.

1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6

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@tuckerp

Here were the tests ran by my Rhumy. Medicare covered the costs. I would have to try and go back 2 years to see what the results were. I dont remember. He also ran a PET scan which was also covered.

1.. CBC with DIFF
2. ESR
3. CRP, HS-CRP **
4. HBsAG
5. Interferon Gamma, Serum
6. Hep -B
7. Anti-Chromatin Ab, IgC (RDL)
8. CCP Antibodies IgG/IgA
9. 14-3-3 eta Protein
10. Antiphospholipid Antibody APS, APLS
11.RF test
12. ANA - antinuclear antibody
13. Aldolase - With CK, ALT, AST
14. Interleukin 2 and 6

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My rheummy, who seems very sharp, is pretty set in her idea that PMR only last about 3 years. I've had most of what you have had except the IL 2 and 6. When I first came to her, I was just coming off steroids and my system was pretty inactive. I suspect that is no longer true. I think she and I are going to clash about this. Should be interesting.

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@suetex

My rheummy, who seems very sharp, is pretty set in her idea that PMR only last about 3 years. I've had most of what you have had except the IL 2 and 6. When I first came to her, I was just coming off steroids and my system was pretty inactive. I suspect that is no longer true. I think she and I are going to clash about this. Should be interesting.

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I just did a quick google search of "pmr and IL-6" some stuff appears. But plenty of data. Here is an NIH paper.
https://pubmed.ncbi.nlm.nih.gov/2124160/

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@linda7

I'm not able to create a link but this is the URL for the report on the phase 3 clinical trial for Zevzara used for PMR. It was only 118 patients. If I read it correctly, 28% of the group taking Kevzara were off prednisone in a year versus 10% for the placebo. It discusses lab abnormalities and side effects, which appear to be low. I will start Kevzara this week. Copy/paste should get you to the paper.
https://www.nejm.org/doi/full/10.1056/NEJMoa2303452

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I’ve been on Kevzara 8 months now and was able to get off prednisone after 4 months. It is keeping my CRP and ESR normal. I still have PMR pain when the shot wears off at about 10 days and it takes a few days to kick in. No side effects from the kevzara, other than infection in my arm once. Doc says we hope to get flares in to remission within about a year.

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@msmoxsea

I’ve been on Kevzara 8 months now and was able to get off prednisone after 4 months. It is keeping my CRP and ESR normal. I still have PMR pain when the shot wears off at about 10 days and it takes a few days to kick in. No side effects from the kevzara, other than infection in my arm once. Doc says we hope to get flares in to remission within about a year.

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I need to ask how long you took prednisone before Kevzara was started.

Research studies usually looked at "newly diagnosed" patients with PMR. Kevzara allowed a significant number of patients to have a decrease of PMR symptoms within a few months after starting Kevzara. For you to get off Prednisone in 4 months is very good. It takes about a year of treatment with Kevzara for patients to have a "sustained remission."

I wonder what experience people have with Kevzara when they were diagnosed with PMR a long time ago and have been on prednisone for a long time. Were you newly diagnosed or did you have PMR for a long time??

I have taken Actemra for more than 5 years. It took me two years to be prednisone free. I had relapses when Actemra was stopped. I had PMR for more than 12 years. Except for about 6 months at the start, I was on prednisone the entire time.

My rheumatologist attributed my relapses to how long PMR was active. He said the immune system has the ability to form a long term memory for things it attacks. This is detrimental in autoimmune disorders because my immune system was attacking me --- my tissues won't ever go away so my immune system isn't likely to forget about them anytime soon. For this reason, my rheumatologist doesn't have a plan to stop Actemra anytime soon. I still do a monthly infusions of Actemra. I don't have any serious side effects from Atemra. My PMR symptoms are well controlled but I wouldn't say I'm completely pain free. I'm finally off prednisone and my quality of life is much improved.

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@dadcue

I need to ask how long you took prednisone before Kevzara was started.

Research studies usually looked at "newly diagnosed" patients with PMR. Kevzara allowed a significant number of patients to have a decrease of PMR symptoms within a few months after starting Kevzara. For you to get off Prednisone in 4 months is very good. It takes about a year of treatment with Kevzara for patients to have a "sustained remission."

I wonder what experience people have with Kevzara when they were diagnosed with PMR a long time ago and have been on prednisone for a long time. Were you newly diagnosed or did you have PMR for a long time??

I have taken Actemra for more than 5 years. It took me two years to be prednisone free. I had relapses when Actemra was stopped. I had PMR for more than 12 years. Except for about 6 months at the start, I was on prednisone the entire time.

My rheumatologist attributed my relapses to how long PMR was active. He said the immune system has the ability to form a long term memory for things it attacks. This is detrimental in autoimmune disorders because my immune system was attacking me --- my tissues won't ever go away so my immune system isn't likely to forget about them anytime soon. For this reason, my rheumatologist doesn't have a plan to stop Actemra anytime soon. I still do a monthly infusions of Actemra. I don't have any serious side effects from Atemra. My PMR symptoms are well controlled but I wouldn't say I'm completely pain free. I'm finally off prednisone and my quality of life is much improved.

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I was on Prednisone for over a year prior. I had a lot of side effects from the Pred. (20 mg) and did not tolerate getting off of it, my lab results shot right up. So my doc started to taper before I started the Kevzara. I was finally diagnosed with PMR in May 2023 after a vision issue.

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