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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

Welcome to the Polymyalgia Rheumatica (PMR) group on Mayo Clinic Connect.

Meet other members who are dealing with PMR. Let’s learn from each other and share stories about living well with PMR, coping with the challenges and offering tips.We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Grab a cup of coffee or beverage of choice and let’s chat. Why not start by introducing yourself? What's your experience with PMR? How are you doing today?

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

Profile picture for cheraloha
cheraloha | @cheraloha | Apr 29 8:15pm
In reply to @queenshort "I’m not sure if I am typical or not. I took a very hard fall, I’m..." + (show)
Profile picture for queenshort @queenshort

I’m not sure if I am typical or not. I took a very hard fall, I’m kind of a “just get up and keep going” person. I slammed the whole right side of my body onto concrete floor. About a week later I had difficulty lifting a cup with my right arm.. right shoulder and ribs very painful.. thinking”I broke something”
A few days later woke with terrible flu like symptoms “but not quite exact” . I could not get myself upright from bed, could not get up from chair, get in and out of bathtub, get dressed. Curiously the severe pain was only right ribs , arm and shoulder and only then moved into my left shoulder. Otherwise just severe general malaise and low grade fever. I am very active 71 and was returning from a 5 mile hilly hike when I fell.
7 trips to Dr, and numerous blood tests and xrays over a month to get diagnosis.. CRP and sed rate thru roof. 1 dose of prednisone and all better… apparently this is defining. That was several months ago and weaning prednisone now, on 3mg.
My onset was very quick and very hard. My Dr thinks I may not relapse. I hope not. I love gardening and hiking and I live alone.

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Hi, I took a hard fall while hiking and the next day, felt weak all over. Ultimately, I was diagnosed with PMR. That was over a year ago. Down to 4 mgs of Pred and on Kevzara. You're doing well if you are already down to 3 mgs. In any event, my onset was quick and the result of a hard fall@queenshort

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Profile picture for bbrass
bbrass | @bbrass | Apr 30 10:13am
In reply to @queenshort "I’m not sure if I am typical or not. I took a very hard fall, I’m..." + (show)
Profile picture for queenshort @queenshort

I’m not sure if I am typical or not. I took a very hard fall, I’m kind of a “just get up and keep going” person. I slammed the whole right side of my body onto concrete floor. About a week later I had difficulty lifting a cup with my right arm.. right shoulder and ribs very painful.. thinking”I broke something”
A few days later woke with terrible flu like symptoms “but not quite exact” . I could not get myself upright from bed, could not get up from chair, get in and out of bathtub, get dressed. Curiously the severe pain was only right ribs , arm and shoulder and only then moved into my left shoulder. Otherwise just severe general malaise and low grade fever. I am very active 71 and was returning from a 5 mile hilly hike when I fell.
7 trips to Dr, and numerous blood tests and xrays over a month to get diagnosis.. CRP and sed rate thru roof. 1 dose of prednisone and all better… apparently this is defining. That was several months ago and weaning prednisone now, on 3mg.
My onset was very quick and very hard. My Dr thinks I may not relapse. I hope not. I love gardening and hiking and I live alone.

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@queenshort what was your prednisone dosage to start and how long did it take you to wean to 3mg? Also, did you experience any of the pain/ache symptoms while weaning?

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queenshort | @queenshort | Apr 30 1:36pm

Hello. I started at 60mg, weaning by 20 mg, down every three days to 20 mg which I stayed on for about a week then weaned by 5 mg every three days until I reached 5 mg which I stayed on for two months. A recheck of my inflammatory markers showed them back in the normal range. Now I am weaning by 1 mg a month. I can’t say that I have had any significant symptoms return during this process.
My symptoms abated with in the first couple days of starting prednisone; I have been told that it is diagnostically definitive for PMR if your symptoms abate quickly with prednisone.

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1 reply
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pmrnew | @pmrnew | May 1 7:25am
In reply to @pmr100 "Hi, I'm curious if anyone had their PMR start shortly (maybe 2 to4 weeks) after a..." + (show)
Profile picture for pmr100 @pmr100

Hi,
I'm curious if anyone had their PMR start shortly (maybe 2 to4 weeks) after a vaccine shot. Mine did about a year ago after a Prevnar-20 vaccination! While trying to deal with the pain through physical therapy I discovered 3 more patients with similar beginnings to their PMR stories. Two had symptoms that began after COVID vaccine shots and one after the current flu vaccine. Research has revealed a small number of additional patients starting PMR following COVID shots. Manufactures have little or no info to share. I lived with the pain 6 months until my MD son came home and recommended CRP & ESR tests which confirmed it. I still have it after slowly stepping down the dose conc. to zero over several months. The only potential allergen I find common to all three vaccines is Tween-80. Two new surfactants have been developed that in the future may replace Tween-80 in vaccines and other drugs.

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@pmr100 In short: yes. I had flu vaccine and COVID booster shot 17 NOV 2025 and started inexplicable muscle pain early December. By March SIX docs (all MDs we spoke with extensively, but only 1 my own doctor) had said that they have seem PMR show up after boosters. I never had any health issues and thought pain was from hiking/skiing/stairs but not really, just could not figure it out. Early January my husband told me about classic PMR symptoms, which matches exactly, and took CRP and ESR, all way high. Due to Prednisone side effects I refused for months until getting out of bed took an hour. Admittedly I fasted for 31 days and 6 days, which was a great decision. March 20 2026 I started Prednisone, 30MG and tapering each week down 5MG. Hope this answers partly your question.

Has anyone tapered from Prednisone in just a few months and not had PMR return? Zero pain during what seems a quick and fast taper if reading about others suffering for a much longer time.

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pmrnew | @pmrnew | May 1 7:27am
In reply to @queenshort "Hello. I started at 60mg, weaning by 20 mg, down every three days to 20 mg..." + (show)
Profile picture for queenshort @queenshort

Hello. I started at 60mg, weaning by 20 mg, down every three days to 20 mg which I stayed on for about a week then weaned by 5 mg every three days until I reached 5 mg which I stayed on for two months. A recheck of my inflammatory markers showed them back in the normal range. Now I am weaning by 1 mg a month. I can’t say that I have had any significant symptoms return during this process.
My symptoms abated with in the first couple days of starting prednisone; I have been told that it is diagnostically definitive for PMR if your symptoms abate quickly with prednisone.

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@queenshort Ohhh, quick and successful taper gives me dreams and hope. Thank you for sharing;-)

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2 replies
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salgalincal | @salgalincal | May 2 10:22am
In reply to @pmrnew "@queenshort Ohhh, quick and successful taper gives me dreams and hope. Thank you for sharing;-)" + (show)
Profile picture for pmrnew @pmrnew

@queenshort Ohhh, quick and successful taper gives me dreams and hope. Thank you for sharing;-)

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@pmrnew
https://connect.mayoclinic.org/comment/1564657/
Read this post from someone else on the Mayo site. Info from Canada. Explains the process of tapering so well.

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cyndip | @cyndip | May 2 10:59am
In reply to @pmrnew "@queenshort Ohhh, quick and successful taper gives me dreams and hope. Thank you for sharing;-)" + (show)
Profile picture for pmrnew @pmrnew

@queenshort Ohhh, quick and successful taper gives me dreams and hope. Thank you for sharing;-)

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It’s not quick but after relapses with even very careful tapering when I got under 10 mg, I am having great luck with a slow taper schedule I read about on this site. It goes like this: (H stands for higher dose, L stands for lower dose. The lower dose I’m using is always .5 mg lower than the higher dose was). The schedule is:
H H L H H L
H L H L H L
H L L H L L
L L L L L L
Then start again with the low dose as the new high dose. So it’s 6 days at each level of the taper. If I feel a little pain creeping back in I just stay put at that level for a few more days and so far it has always resolved.
Hope that makes sense. It has really worked for me, after 2 years of frustrating up and down med adjustments due to flares as my dose started coming down.
I’m down to 2 mg now and if all goes well will be off completely this summer.
Will always be grateful to the person who posted this schedule. My doc has been very supportive because what we were doing clearly wasn’t working well for me.
Best of luck - hang in there!

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1 reply
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skritch | @skritch | May 3 3:59pm

I see I have "liked" this 3 x. I am going to give this a try.
So frustrated but trying to be positive (although difficult some days). Hugs.

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1 reply
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tweetypie13 | @tweetypie13 | May 3 6:07pm
In reply to @skritch "I see I have "liked" this 3 x. I am going to give this a try...." + (show)
Profile picture for skritch @skritch

I see I have "liked" this 3 x. I am going to give this a try.
So frustrated but trying to be positive (although difficult some days). Hugs.

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@skritch
Hint, my Dr told me not to drop more than 10% a time and don’t drop again until pain free. Sometimes it took a few more days.
Once I got below 10 it was harder.

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noramontie | @noramontie | May 8 12:45pm

Did anyone else experience their first symptoms with PMR after receiving prolia?

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