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.

Jump to this post

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.

REPLY
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.

Jump to this post

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

REPLY
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!

Jump to this post

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.

REPLY
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.

Jump to this post

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

REPLY
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.

Jump to this post

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.

REPLY
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.

Jump to this post

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

REPLY
View MoreView Less
Please sign in or register to post a reply.