1. < Polymyalgia Rheumatica (PMR)

Does Kevzara put PMR in to remission?

Posted by besmith57 @besmith57, Apr 26 7:28pm

I was diagnosed with PRM in February of this year. I think I have had it much longer. I had a double spine fusion in 2021 and the pain never really went away. Once I started prednisone my back pain went away along with the terrible body pain. I tried weaning from my initial dose down to 5 mg but my rheumatologist just increased me to 7.5mg along with methotrexate 10mg a week. (this was my second dose today) She wants me at 7.5mg for 3 weeks and then wean to 5mg. I still have pain at the 7.5mg. I had bad osteoporosis that with Tymlos brought me back to osteopenia. My doctor wants me off steroids as soon as possible but the pain is terrible at low doses. Because of my brittle bones, I don't want to be on steroids either. She said if the methotrexate doesn't work she would like me to try Kevzara. I've been reading the discussions on this site (which I love!) and googling the drug but I haven't seen an answer if the Kevzara would put me in permanent remission. I have had such bad pain for over three years from the two broken vertebrae and now PMR. I just want my pain-free life back. I have missed so many things because of the pain. Does anyone think the Kevzara would give me my life back?

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

DadCue | @dadcue | Apr 27 6:59am

"Conclusions: Sarilumab showed significant efficacy in achieving sustained remission and reducing the cumulative glucocorticoid dose in patients with a relapse of polymyalgia rheumatica during glucocorticoid tapering. (Funded by Sanofi and Regeneron Pharmaceuticals; SAPHIRE ClinicalTrials.gov number, NCT03600818.)
https://pubmed.ncbi.nlm.nih.gov/37792612/
Remission isn't achieved in all cases but a sustained remission was achieved in significantly more cases than with prednisone alone. People are sometimes able to discontinue Prednisone but many need to stay on Kevzara. Other people achieved remission and can also discontinue Kevzara. There may be significant side effects from Kevzara so there are pros and cons to Kevzara and it can be expensive.

I don't have any personal experience with Kevzara. However, Kevzara is FDA approved for the treatment of PMR. In most cases it is used for relapsing cases of PMR or for people who don't tolerate prednisone well --- I would guess that might include almost everyone.

If you have osteoporosis then prednisone might not be the best medication for you.

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2 replies
besmith57 | @besmith57 | Apr 27 7:26am
In reply to @dadcue ""Conclusions: Sarilumab showed significant efficacy in achieving sustained remission and reducing the cumulative glucocorticoid dose in..." + (show)
@dadcue

"Conclusions: Sarilumab showed significant efficacy in achieving sustained remission and reducing the cumulative glucocorticoid dose in patients with a relapse of polymyalgia rheumatica during glucocorticoid tapering. (Funded by Sanofi and Regeneron Pharmaceuticals; SAPHIRE ClinicalTrials.gov number, NCT03600818.)
https://pubmed.ncbi.nlm.nih.gov/37792612/
Remission isn't achieved in all cases but a sustained remission was achieved in significantly more cases than with prednisone alone. People are sometimes able to discontinue Prednisone but many need to stay on Kevzara. Other people achieved remission and can also discontinue Kevzara. There may be significant side effects from Kevzara so there are pros and cons to Kevzara and it can be expensive.

I don't have any personal experience with Kevzara. However, Kevzara is FDA approved for the treatment of PMR. In most cases it is used for relapsing cases of PMR or for people who don't tolerate prednisone well --- I would guess that might include almost everyone.

If you have osteoporosis then prednisone might not be the best medication for you.

Jump to this post

Thanks for replying to my question!

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1 reply
DadCue | @dadcue | Apr 27 7:40am
In reply to @besmith57 "Thanks for replying to my question!" + (show)
@besmith57

Thanks for replying to my question!

Jump to this post

No problem.

I'm on Actemra which is FDA approved for GCA but was approved for me because of 12 years of PMR and long term use of prednisone. Kevzara and Actemra basically work in the same way and are in the same classification of medications -- both are IL-6 inhibitors.
https://www.hcplive.com/view/study-underlines-potential-of-il-6-inhibitors-for-polymyalgia-rheumatica
Actemra worked well for me and I enjoy being off prednisone after 12 very long years.

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1 reply
southtexas | @southtexas | Apr 27 7:41am

Risk vs. reward, each individual has to decide if their PMR severity is greater than the black box warnings of Kevzara.

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1 reply
besmith57 | @besmith57 | Apr 27 8:12am
In reply to @dadcue ""Conclusions: Sarilumab showed significant efficacy in achieving sustained remission and reducing the cumulative glucocorticoid dose in..." + (show)
@dadcue

"Conclusions: Sarilumab showed significant efficacy in achieving sustained remission and reducing the cumulative glucocorticoid dose in patients with a relapse of polymyalgia rheumatica during glucocorticoid tapering. (Funded by Sanofi and Regeneron Pharmaceuticals; SAPHIRE ClinicalTrials.gov number, NCT03600818.)
https://pubmed.ncbi.nlm.nih.gov/37792612/
Remission isn't achieved in all cases but a sustained remission was achieved in significantly more cases than with prednisone alone. People are sometimes able to discontinue Prednisone but many need to stay on Kevzara. Other people achieved remission and can also discontinue Kevzara. There may be significant side effects from Kevzara so there are pros and cons to Kevzara and it can be expensive.

I don't have any personal experience with Kevzara. However, Kevzara is FDA approved for the treatment of PMR. In most cases it is used for relapsing cases of PMR or for people who don't tolerate prednisone well --- I would guess that might include almost everyone.

If you have osteoporosis then prednisone might not be the best medication for you.

Jump to this post

You are so right about me getting off steroids. I have done some research about Kevzara, but need to do more, especially about the side effects. Thanks again. This is an awful disease with no real end in sight.

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1 reply
besmith57 | @besmith57 | Apr 27 8:19am
In reply to @dadcue "No problem. I'm on Actemra which is FDA approved for GCA but was approved for me..." + (show)
@dadcue

No problem.

I'm on Actemra which is FDA approved for GCA but was approved for me because of 12 years of PMR and long term use of prednisone. Kevzara and Actemra basically work in the same way and are in the same classification of medications -- both are IL-6 inhibitors.
https://www.hcplive.com/view/study-underlines-potential-of-il-6-inhibitors-for-polymyalgia-rheumatica
Actemra worked well for me and I enjoy being off prednisone after 12 very long years.

Jump to this post

I'm happy you are feeling better and off steroids. I assume both drugs are priced about the same. I've read that the cost is a deterrent.

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besmith57 | @besmith57 | Apr 27 8:21am
In reply to @southtexas "Risk vs. reward, each individual has to decide if their PMR severity is greater than the..." + (show)
@southtexas

Risk vs. reward, each individual has to decide if their PMR severity is greater than the black box warnings of Kevzara.

Jump to this post

Thanks for responding. My osteoporosis is my main reason for looking for alternatives. I need to do more research on the side effects.

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DadCue | @dadcue | Apr 27 8:24am
In reply to @besmith57 "You are so right about me getting off steroids. I have done some research about Kevzara,..." + (show)
@besmith57

You are so right about me getting off steroids. I have done some research about Kevzara, but need to do more, especially about the side effects. Thanks again. This is an awful disease with no real end in sight.

Jump to this post

https://www.medicalnewstoday.com/articles/326501#side-effects
This spells out the potential side effects pretty well.

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1 reply
besmith57 | @besmith57 | Apr 27 9:04am
In reply to @dadcue "https://www.medicalnewstoday.com/articles/326501#side-effects This spells out the potential side effects pretty well." + (show)
@dadcue

https://www.medicalnewstoday.com/articles/326501#side-effects
This spells out the potential side effects pretty well.

Jump to this post

The website you listed was a wealth of knowledge. Thank you. I have had breast cancer and melanoma so those would be things I would have to monitor. I see my rheumatologist in June so I expect that will be in our conversation She told me to let her know if I have a problem when I taper down to 5mgs. I think I will be talking to her sooner after I wean down to 5mgs. I just love this site and the people who take the time to answer questions.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 28 12:45pm
In reply to @besmith57 "The website you listed was a wealth of knowledge. Thank you. I have had breast cancer..." + (show)
@besmith57

The website you listed was a wealth of knowledge. Thank you. I have had breast cancer and melanoma so those would be things I would have to monitor. I see my rheumatologist in June so I expect that will be in our conversation She told me to let her know if I have a problem when I taper down to 5mgs. I think I will be talking to her sooner after I wean down to 5mgs. I just love this site and the people who take the time to answer questions.

Jump to this post

@besmith57, you might also be interested in other discussions talking about PMR and Kevzara (sarilumab). See these:
- How does Kevzara help with Pmr symptoms and pain? I am being weaned: https://connect.mayoclinic.org/discussion/how-does-kevzara-help-with-pmr-symptoms-and-pain-i-am-being-weaned/
- Kevzara (sarilumab) to treat PMR: https://connect.mayoclinic.org/discussion/kevzara-sarilumab-to-treat-pmr/
- Leflunomide, Kevzara for PMR, who knows about them?: https://connect.mayoclinic.org/discussion/leflunomide-kevzara-for-pmr-who-knows-about-them/
- Starting treatment with Kevzara: My journey: https://connect.mayoclinic.org/discussion/first-dose-of-kevzara/

You may also be interested in follow the breast cancer group and the osteoporosis group:
- Breast Cancer Support Group https://connect.mayoclinic.org/group/breast-cancer/
- Osteoporosis & Bone Health Support Group https://connect.mayoclinic.org/group/osteoporosis/

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