1. < Polymyalgia Rheumatica (PMR)

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.

kimh | @kimh | Feb 17, 2021
In reply to @moni54 "Up and down stairs, that is, which I had to do at home. Slowly and painfully." + (show)
@moni54

Up and down stairs, that is, which I had to do at home. Slowly and painfully.

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And sound effects, at least at my house....oooch oooch oooch!!! My elbows and wrists also hurt. Is this normal? Do you think a cortisone shot might help?

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irishdancer | @irishdancer | Feb 17, 2021
In reply to @karinaph "Agree to these insights. And bilateral. I’d like to add that it got progressives better by..." + (show)
@karinaph

Agree to these insights. And bilateral. I’d like to add that it got progressives better by the end of the day, every morning was like Groundhog Day, here we go again. And I had muscle “ cramping “ best way to describe, in the most unusual places, and strange discomfort tin the saddle area. I think this is the neuro component of this disorder.

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Yes, bilateral and generalized was the reason that I was quite sure that the pain I had was PMR and not osteoarthritis or something like tendonitis.

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munchie | @munchie | Feb 17, 2021
In reply to @jerseyjames "Thanks all as usual for this dialog. It seems to connect to my first post of..." + (show)
@jerseyjames

Thanks all as usual for this dialog. It seems to connect to my first post of a few months ago as my rheumatologist also seems to fall into the school of thinking that considers normal CRP's and Sed Rates as proof that PMR is not really (clinically) indicated. That said, he is eminently aware of my discomfort and truly believes that I am not making it up as I continue to feel better as I titrate down from 20 mg to 7 mg...hopefully one mg lower in each of the coming months. But back to the school of thinking....I believe that, by definition, symptoms of PMR occur in (mostly) 70+ Caucasian females and males, and often presents with pain, stiffness, and swelling in the joints & muscles of the hip and shoulder (girdles). But a normal ESR/CRP (which I have been running for 4 months) is indicative of no such swelling in the joints? I'd add that I have been managing Ankylosing Spondylitis for almost 50 years with considerable pain early-on, but very little redness or swelling.

So what is a rheumatologist to do? 20% of us cannot be psychosomatic. I've got a DEXA scan next week and will report any interesting findings. Hope all are doing well under what is shaping up to be another trying year. Before being laid-off from a wonderful consulting job a few weeks ago, I used to tell my working associate to practice Project Team Social Distancing (or PTSD as I call it).

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i personally even with sed rate and crp normal would treat empirically with a dose pack..if the symptoms disappear quickly on steroids and just as suddenly reappear after cessation i think the dx is almost certain

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Jeff Down Under | @legendts | Feb 17, 2021
In reply to @kimh "What is DEXA?" + (show)
@kimh

What is DEXA?

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DEXA is a bone density scan.

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moni54 | @moni54 | Feb 17, 2021
In reply to @kimh "And sound effects, at least at my house....oooch oooch oooch!!! My elbows and wrists also hurt...." + (show)
@kimh

And sound effects, at least at my house....oooch oooch oooch!!! My elbows and wrists also hurt. Is this normal? Do you think a cortisone shot might help?

Jump to this post

Even though the diagnosis targets proximal limbs (I looked it up - section of limbs closest to core of body, so thighs, upper arms), PMR often involves the shoulders and neck. Also, at times my ankle or calf would hurt, go figure. I suspect the pain is free to move around a bit. Don't know about cortisone, but soon after I started prednisone I felt much better. Now about 90-95% normal and on 10 mg.

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kimh | @kimh | Feb 17, 2021
In reply to @legendts "DEXA is a bone density scan." + (show)
@legendts

DEXA is a bone density scan.

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Thanks @legendts ! I actually should be finding out the results of my bone density test tomorrow! I'm currently receiving a prolia shot every six months to help with the osteoporosis. But I have just 'heard' (don't you hate that?) that if I were to go off of prolia, any gains made would be quickly lost.

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Jeff Down Under | @legendts | Feb 17, 2021

Many thanks to you all for the warm welcome and your posts specifically to me. I was supposed to be looking after my wife (she has CLL) but in this instance she was looking after me! Thank goodness I am back pretty much to normal. I didn’t have any pain or discomfort at all this morning so I’m hoping that continues. I really feel for those of you that had/have so much trouble getting diagnosed as I really only had to persevere with severe symptoms for about three weeks. I am hopeful that getting onto it early may give me a better long term outcome providing I follow a slow tapering off of the Prednisolone. Subject to seeing a rheumatologist and the first available appointment is mid June, I am going to do 15mg for three weeks, 12.5 for the same then 10 for four to six weeks (probably do five weeks) then reduce by 1mg every five weeks to zero. Such a wealth of information on this site and still trying to navigate around it. Keep safe folks. Edit: DEXA scan happening on 26th and last one three years ago was borderline osteoporosis.

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kimh | @kimh | Feb 17, 2021
In reply to @moni54 "Even though the diagnosis targets proximal limbs (I looked it up - section of limbs closest..." + (show)
@moni54

Even though the diagnosis targets proximal limbs (I looked it up - section of limbs closest to core of body, so thighs, upper arms), PMR often involves the shoulders and neck. Also, at times my ankle or calf would hurt, go figure. I suspect the pain is free to move around a bit. Don't know about cortisone, but soon after I started prednisone I felt much better. Now about 90-95% normal and on 10 mg.

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I get the shoulders and neck, especially when I was unable to brush the back of my hair! Maybe the knees and elbows are regular arthritis? Much worse in bad weather!

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Jeff Down Under | @legendts | Feb 17, 2021

With me my right knee progressively swelled and I was unable to bend it to get dressed. Since the Prednisolone it is back to normal so I believe it is related to the PMR.

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kimh | @kimh | Feb 17, 2021
In reply to @legendts "With me my right knee progressively swelled and I was unable to bend it to get..." + (show)
@legendts

With me my right knee progressively swelled and I was unable to bend it to get dressed. Since the Prednisolone it is back to normal so I believe it is related to the PMR.

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Good to know @legendts . I was wondering if I grew a new disease lol!!!

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