1. < Polymyalgia Rheumatica (PMR)

Kevzara (sarilumab) to treat PMR

Posted by hfoster @hfoster, Oct 11, 2022

I am 54, diagnosed with PMR June 2022 but symptoms started Nov 2021. I have tapered Pred to 8mg and most days my pain is around a 2 or 3 out of 10. Reasonable, I felt for active PMR and I'll take Tylenol Arthritis to help with pain if needed. But, my Rheumatologist wants me off Pred ASAP. He wants me to take Kevzara and says studies have shown that it gets rid of PMR and the drug should be approved to treat PMR by this spring. Has anyone been part of the trials and/or had experience using this drug to treat PMR?

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

Mentor
John, Volunteer Mentor | @johnbishop | Feb 26 11:45am
In reply to @wildflower1948 "I was diagnosed with PMR at age 50. I woke up one day and suddenly could..." + (show)
@wildflower1948

I was diagnosed with PMR at age 50. I woke up one day and suddenly could not lift my arms and could not walk up stairs without gripping the rail and pulling myself.
The good news: My PMR was treated with prednisone. I took it for two years and then weaned myself off it. PMR has never returned. I am now 75.

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That is exactly what I’m hoping for 🙂. First time it stayed away for 6 years and I am a little over 6 years since I weaned off prednisone for the second time. At age 80 I am trying to do everything I can to keep the PMR in remission.

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1 reply
wildflower1948 | @wildflower1948 | Feb 26 1:21pm
In reply to @johnbishop "That is exactly what I’m hoping for 🙂. First time it stayed away for 6 years..." + (show)
@johnbishop

That is exactly what I’m hoping for 🙂. First time it stayed away for 6 years and I am a little over 6 years since I weaned off prednisone for the second time. At age 80 I am trying to do everything I can to keep the PMR in remission.

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John, are you saying that you had two different occurrences of PMR?
And best wishes to you for staying in remmision!

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Feb 26 1:47pm
In reply to @wildflower1948 "John, are you saying that you had two different occurrences of PMR? And best wishes to..." + (show)
@wildflower1948

John, are you saying that you had two different occurrences of PMR?
And best wishes to you for staying in remmision!

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Yes, the first time diagnosed was 2007 and lasted until summer 2010, about 3-1/2 years. It stayed in remission until 2016 and I was able to taper off of prednisone by mid 2018. I've been off of prednisone since then and only have minor stiffness and aches associated with degenerative arthritis.

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1 reply
wildflower1948 | @wildflower1948 | Feb 26 8:12pm
In reply to @johnbishop "Yes, the first time diagnosed was 2007 and lasted until summer 2010, about 3-1/2 years. It..." + (show)
@johnbishop

Yes, the first time diagnosed was 2007 and lasted until summer 2010, about 3-1/2 years. It stayed in remission until 2016 and I was able to taper off of prednisone by mid 2018. I've been off of prednisone since then and only have minor stiffness and aches associated with degenerative arthritis.

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I am sorry that happened. I'm glad you are off prednisone! And yes, I hear you regarding aches and pains. Best Wishes

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marymv | @marymv | Apr 4 7:37pm
In reply to @michwest "Hi @hfoster I’m the process of being diagnosed myself with PMR and I am also 54...." + (show)
@michwest

Hi @hfoster I’m the process of being diagnosed myself with PMR and I am also 54. My rheumatologist also feels I am quite young and she has had patients who are young presenting like they had PMR but it was mimicking RA. She has ordered a full PET scan on me to rule out anything else before starting me on prednisone. I also don’t have pain in fingers, toes etc - pain in hips and down back of legs and now developed in my shoulders and neck.
I was wondering how many ‘young’ people in this group have been diagnosed with PMR as well.

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Hi, I was 58 and it developed within 48hrs of my 2nd Pfizer COVID vaccine. I started on 20mg of Prednisone 3 yrs ago. Tapering ok until I hit 10mg. Only able to get to 6mg in the last 2 yrs but then flared 3 times. Seems like 7 is my sweet spot. Hoping my Rheum will trial me on Kevzara this month. Fingers crossed.

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1 reply
DadCue | @dadcue | Apr 4 7:55pm
In reply to @marymv "Hi, I was 58 and it developed within 48hrs of my 2nd Pfizer COVID vaccine. I..." + (show)
@marymv

Hi, I was 58 and it developed within 48hrs of my 2nd Pfizer COVID vaccine. I started on 20mg of Prednisone 3 yrs ago. Tapering ok until I hit 10mg. Only able to get to 6mg in the last 2 yrs but then flared 3 times. Seems like 7 is my sweet spot. Hoping my Rheum will trial me on Kevzara this month. Fingers crossed.

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It is incredible how many people can't get around that 7 mg barrier. I hope Kevzara will make it easier.

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2young4pmr | @2young4pmr | Aug 21 11:42pm
In reply to @michwest "Hi @hfoster I’m the process of being diagnosed myself with PMR and I am also 54...." + (show)
@michwest

Hi @hfoster I’m the process of being diagnosed myself with PMR and I am also 54. My rheumatologist also feels I am quite young and she has had patients who are young presenting like they had PMR but it was mimicking RA. She has ordered a full PET scan on me to rule out anything else before starting me on prednisone. I also don’t have pain in fingers, toes etc - pain in hips and down back of legs and now developed in my shoulders and neck.
I was wondering how many ‘young’ people in this group have been diagnosed with PMR as well.

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I was also too young diagnosed at 43.

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1 reply
jlo2252 | @jlo2252 | Aug 22 2:20am
In reply to @2young4pmr "I was also too young diagnosed at 43." + (show)
@2young4pmr

I was also too young diagnosed at 43.

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@2young4pmr
Welcome to the PMR support group!
We are here to help and listen to all of your PMR questions….
It may be unusual, but not unheard of to get PMR at the age of 43. Auto immune disorders don’t seem to have a age limit.
I was diagnosed with reactive arthritis at the age of 23. This particular condition usually occurs in young men 98% of the time. I was in the 2% female category!
At the time I was working in a doctors office, married with an 18 month old son! It was a little over a year before I could physically go back to work (this time working in a hospital). The one good thing is that it went into remission for 20 years! I now get occasional flare ups that are certainly not as bad as the original.
PMR came along at the age of 72. I’ve had my ups and downs, but this group has certainly been a wealth of information and support.
What kind of treatment are you getting and is it helping with your pain?

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1 reply
patzmar | @patzmar | Aug 23 5:53am

I have been on a mostly low dose of prednisone for 3 years. Lots of flare ups along the way. I am about to begin Kevzara. My doctor really wants me off of prednisone because of the side effects. I hope to report back here with good news! Pat m

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1 reply
jlo2252 | @jlo2252 | Aug 23 7:28am
In reply to @patzmar "I have been on a mostly low dose of prednisone for 3 years. Lots of flare..." + (show)
@patzmar

I have been on a mostly low dose of prednisone for 3 years. Lots of flare ups along the way. I am about to begin Kevzara. My doctor really wants me off of prednisone because of the side effects. I hope to report back here with good news! Pat m

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@patzmar
Hello Pat!
It sounds like your doctor is keeping you at a low dose and this is not controlling your pain! With the addition of the Kevzara this should help you a lot with pain and get you off the prednisone at the same time!
Read the wealth of posts here to find ideas for pain relief— both conventional and alternative.
Good luck on your health journey!

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