1. < Polymyalgia Rheumatica (PMR)

How did your PMR begin?

Posted by ctjpmarie @ctjpmarie, Apr 13, 2023

In trying to understand PMR-( my husband has it) …I’m curious to know -if any of you had anything specifically stressful, going on in your life, at the onset of PMR? You know-besides, the normal day-to-day stressors of life?

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

janettec | @janettec | Apr 28, 2023
In reply to @barracudacool "I am not normal, atypical, non classic…..lots of other words like that. My rheumatologist uses these..." + (show)
@barracudacool

I am not normal, atypical, non classic…..lots of other words like that. My rheumatologist uses these terms to indicate that my PMR symptoms are different than most others. Except they aren’t. Not really. There really isn’t a garden variety PMR and I wish docs would stop looking for one and locking in one set of symptoms as being typical. Like you, My pain is in my thighs and hips. My CPR was at 113. It’s now normal but my SED remains high around 50. I have been on prednisone since December and can’t get below 25mg without a major flare. Methotrexate added but only on it a month so far so not really helping yet. Probably at 3 to 6 months. Doc is ramping it up though and I start doing 25mg of the Metho along with trying to begin again to taper the prednisone down. As many here have said a slow taper is the only way to do it. My next taper is from 25mg to 22.5. I think small, more subtle tapers works best.

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Thank you!

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Linda Moross | @lmoross | Apr 28, 2023
In reply to @janettec "I am really struggling with tapering and hoping someone can shed some light on my situation...." + (show)
@janettec

I am really struggling with tapering and hoping someone can shed some light on my situation. I was diagnosed with PMR because I had pain in my hips ... only able to hobble around ... and had a 15 on my CRP. This was December 2021. I was put on 20 mg a day of Prednisone and felt GREAT. But I cannot taper. 18 months later, I'm at 23 mg a day and my internist yesterday has just hoofed up the dose to 50 mg a day (with injectable Methotrexate) and no sign of Giant Cell Art. and finally sending me to a Rheumatologist! This is so scary. Bloodwork is getting worse not better.
Internist does not think this is garden variety PMR. I asked him about Regeneron Kevzara that has recently been approved by FDA for treatment for people who can't taper with PMR and he had not heard of it; seeming more concerned about its expense than me? I am Canadian ... can you help me.

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I think a rheumatologist will be much more knowledgeable and able to help you. Hoping for relief for you.

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pointer134 | @pointer134 | May 6, 2023

(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then. Two days of high fever (42 !!) Pain and stiffness neck, shoulders and hips. RF 140. CRP 45. Anti CCP neg. Got Prednisone, wich worked after a few days. One year later at 10 mg Prednisone and Metotrexate 15 mg, as an steroid sparing. I am not able to taper Prednisone less then 10 mg. So i will start biologic (injections) treatment with Kevzara (Sarilumab) which is allowed by FDA for PMR.
I am interested to connect to patients whom are treated with Kevzara (Sarilumab).

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4 replies
DadCue | @dadcue | May 6, 2023
In reply to @pointer134 "(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then...." + (show)
@pointer134

(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then. Two days of high fever (42 !!) Pain and stiffness neck, shoulders and hips. RF 140. CRP 45. Anti CCP neg. Got Prednisone, wich worked after a few days. One year later at 10 mg Prednisone and Metotrexate 15 mg, as an steroid sparing. I am not able to taper Prednisone less then 10 mg. So i will start biologic (injections) treatment with Kevzara (Sarilumab) which is allowed by FDA for PMR.
I am interested to connect to patients whom are treated with Kevzara (Sarilumab).

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I'm not on Kevzara but I do take Actemra (tocilizumab) for PMR along with some other autoimmune problems. Actemra is in the same classification as Kevzara. Both Kevzara and Actemra are IL-6 receptor blockers.

I took prednisone more than 12 years for PMR. I was 52 when diagnosed with PMR but I'm currently 68 years old and still a male.

I'm so pleased that your doctor is considering Kevzara for PMR. Being on 10 mg of prednisone after a year and a half is a lot of prednisone. I was still on 10 mg of prednisone after more than 12 years. Methotrexate didn't contribute much steroid sparing benefit for me.

Let's hope Kevzara will work well and maybe you will get off both prednisone and methotrexate. Some doctors give methotrexate concurrently with any biologic but my rheumatologist didn't think it was necessary in my case. I had already tried methotrexate twice during more than 12 years of PMR.

I'm very pleased that your doctor is considering Kevzara. My rheumatologist has said Kevzara may be an option for me in the future. I have taken Actemra for 4 years. Initially, I was able to taper off prednisone in less than a year. There were some ups and downs but I have now been completely off prednisone for over a year. For the first time in many years, PMR is on my medical problem list but it now says "in remission" after it.

I wish you luck with Kevzara.

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mcarso | @mcarso | May 6, 2023

I’m 69 no health problems, I workout with dumbbells and run 1.5 miles when I workout. When this started I was trying new dumbbells exercises for my legs. The next day I had muscle stiffness and pain, just thought it was from these new exercises. Well it never went away. My family doc gave me a prednisone pack felt fine within days but the pain came back. Currently I had blood work and mri and awaiting to see a Rheumatology doc. Went from 221 to 207 in a month. Loss muscle mass in arms, shoulders and legs. My sister in law is going through the same with Pmr. We both had Covid shots Pfizer make no boosters . My suspicion falls upon the shot.

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1 reply
DadCue | @dadcue | May 6, 2023
In reply to @pointer134 "(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then...." + (show)
@pointer134

(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then. Two days of high fever (42 !!) Pain and stiffness neck, shoulders and hips. RF 140. CRP 45. Anti CCP neg. Got Prednisone, wich worked after a few days. One year later at 10 mg Prednisone and Metotrexate 15 mg, as an steroid sparing. I am not able to taper Prednisone less then 10 mg. So i will start biologic (injections) treatment with Kevzara (Sarilumab) which is allowed by FDA for PMR.
I am interested to connect to patients whom are treated with Kevzara (Sarilumab).

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https://www.pharmacytimes.com/view/fda-approves-sarilumab-for-adults-with-polymyalgia-rheumatica

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cpd54 | @cpd54 | May 7, 2023

I’ve not been diagnosed with PMR, but after reading some of these post, I feel like I’ve been misdiagnosed with Sjogerns, or possibly have both. My stiffness and pain came on suddenly and moved around. Started in my neck and shoulders, worked it’s way down to my knees, last to be “attacked” were my elbows. Strange that the day after taking a Moderna Covid booster, the pain was EXACTLY the same. Strangest thing I’ve ever had happen. As far as additional stress in my life, yes, I was dealing with my mentally retarded brother having Covid in ICU on ventilator, then having to place him in a nursing home. I adapted the Autoimmune Protocol Diet as well as being tested for food sensitivities. I think this way of eating has allowed me to deal with pain and stiffness without having to take pain killers. I use heating pads daily. I also have osteoporosis and am taking supplements for that that maybe are helping with the PMR and Sjogerns.

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cah | @cah | May 7, 2023
In reply to @pointer134 "(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then...." + (show)
@pointer134

(Male, 68 y) PMR started one and half year ago very suddenly, was healthy till then. Two days of high fever (42 !!) Pain and stiffness neck, shoulders and hips. RF 140. CRP 45. Anti CCP neg. Got Prednisone, wich worked after a few days. One year later at 10 mg Prednisone and Metotrexate 15 mg, as an steroid sparing. I am not able to taper Prednisone less then 10 mg. So i will start biologic (injections) treatment with Kevzara (Sarilumab) which is allowed by FDA for PMR.
I am interested to connect to patients whom are treated with Kevzara (Sarilumab).

Jump to this post

Pointer 134
Good luck. Let the group know how that works for you.
Cah

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1 reply
cah | @cah | May 7, 2023
In reply to @mcarso "I’m 69 no health problems, I workout with dumbbells and run 1.5 miles when I workout...." + (show)
@mcarso

I’m 69 no health problems, I workout with dumbbells and run 1.5 miles when I workout. When this started I was trying new dumbbells exercises for my legs. The next day I had muscle stiffness and pain, just thought it was from these new exercises. Well it never went away. My family doc gave me a prednisone pack felt fine within days but the pain came back. Currently I had blood work and mri and awaiting to see a Rheumatology doc. Went from 221 to 207 in a month. Loss muscle mass in arms, shoulders and legs. My sister in law is going through the same with Pmr. We both had Covid shots Pfizer make no boosters . My suspicion falls upon the shot.

Jump to this post

Mcrso…
I know exactly what your going through and I also believe Covid vaccine is the cause of the increase of Polymyalgia cases.

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cah | @cah | May 7, 2023
In reply to @janettec "I am really struggling with tapering and hoping someone can shed some light on my situation...." + (show)
@janettec

I am really struggling with tapering and hoping someone can shed some light on my situation. I was diagnosed with PMR because I had pain in my hips ... only able to hobble around ... and had a 15 on my CRP. This was December 2021. I was put on 20 mg a day of Prednisone and felt GREAT. But I cannot taper. 18 months later, I'm at 23 mg a day and my internist yesterday has just hoofed up the dose to 50 mg a day (with injectable Methotrexate) and no sign of Giant Cell Art. and finally sending me to a Rheumatologist! This is so scary. Bloodwork is getting worse not better.
Internist does not think this is garden variety PMR. I asked him about Regeneron Kevzara that has recently been approved by FDA for treatment for people who can't taper with PMR and he had not heard of it; seeming more concerned about its expense than me? I am Canadian ... can you help me.

Jump to this post

Janettec;
Definitely see a rheumatologist. My concern is new drugs… how long have they been on trials??? Would like to read data

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