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.

reeseh | @reeseh | Jul 18, 2021
In reply to @scpartain "I'm sorry you have PMR at such a young age. I have just recovered from my..." + (show)
@scpartain

I'm sorry you have PMR at such a young age. I have just recovered from my second bout of PMR. The first appeared thirteen years ago when I was 62. It resolved completely within six months and I was free of pain until I received my first Covid vaccine in January of this year, when I experienced a severe recurrence. With the help of a skilled rheumatologist, I was able to bring the symptoms under control in a few days and I am now in the process of tapering off of prednisone, which is, in my experience, the only effective treatment. I have continued to feel better, even though I am decreasing the prednisone at two-week intervals. The most recent lab results verify that the inflammation has resolved. I hope your journey with PMR will end in a successful resolution and that you will not have any recurrences. Sending my very best wishes to you for healing and recovery.

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Thank you so much for the well wishes. I hope that your reoccurrence from getting the jab resolves itself soon and finds you in good health again.

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1 reply
scpartain | @scpartain | Jul 18, 2021
In reply to @reeseh "Thank you so much for the well wishes. I hope that your reoccurrence from getting the..." + (show)
@reeseh

Thank you so much for the well wishes. I hope that your reoccurrence from getting the jab resolves itself soon and finds you in good health again.

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Thank you so much!

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lizzier | @lizzier | Jul 18, 2021
In reply to @zaa "You again are giving excellent advice Lizzier. I go into second doctor appointment next week and..." + (show)
@zaa

You again are giving excellent advice Lizzier. I go into second doctor appointment next week and have all my questions ready. My artery biopsies are showing negative for GCA which grateful for but still not 100% out of clear. I feel like I can deal with the PMR but not GCA. The prednisone has started making me feel like a human again and can get out of bed and exercise. I’ve been reading up a lot on diet for autoimmune and feel it’s top priority along with stressing less. Wish I could personally visit with all the folks on this site but this connect is very informative and helpful to us all.

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It's one thing to give good advice, but sometimes it's a scary disease. I spent all day Friday in the ER with serious GCA symptoms, and came home exhausted. They did all of the blood work that is typical, and my doc called ahead to let them know I was coming, then he ordered additional testing, even an ultra sound of my eyes, as well as other blood work, and they found nothing. I was fine Friday evening but all day yesterday my eye felt very scratchy and sore. Today they seem fine. I'm 84, and like you I can deal with the PMR, but the other option would be challenging. I love crafting and hand stitching, and I just got back to it after 5 years of not being able to do my craft. I will accept whatever comes my way, but with an 85 year old hubby who was diagnosed 2 years ago with early Alzheimers, I am concerned. We're still doing well. We worked in our badly overrun flower gardens yesterday, and I designed and he planted a whole new bed in a space that was a disaster zone after 5 years of neglect. He's able to do the work, and loves it, and I can do the design, so we've been working on this new flower bed for about a week. We try to find satisfaction in whatever we can do together, and it isn't so bad. Losing my sight would not be a good thing, but perhaps I still have a few more lessons to learn. We'll take what comes.

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1 reply
zaa | @zaa | Jul 18, 2021
In reply to @lizzier "It's one thing to give good advice, but sometimes it's a scary disease. I spent all..." + (show)
@lizzier

It's one thing to give good advice, but sometimes it's a scary disease. I spent all day Friday in the ER with serious GCA symptoms, and came home exhausted. They did all of the blood work that is typical, and my doc called ahead to let them know I was coming, then he ordered additional testing, even an ultra sound of my eyes, as well as other blood work, and they found nothing. I was fine Friday evening but all day yesterday my eye felt very scratchy and sore. Today they seem fine. I'm 84, and like you I can deal with the PMR, but the other option would be challenging. I love crafting and hand stitching, and I just got back to it after 5 years of not being able to do my craft. I will accept whatever comes my way, but with an 85 year old hubby who was diagnosed 2 years ago with early Alzheimers, I am concerned. We're still doing well. We worked in our badly overrun flower gardens yesterday, and I designed and he planted a whole new bed in a space that was a disaster zone after 5 years of neglect. He's able to do the work, and loves it, and I can do the design, so we've been working on this new flower bed for about a week. We try to find satisfaction in whatever we can do together, and it isn't so bad. Losing my sight would not be a good thing, but perhaps I still have a few more lessons to learn. We'll take what comes.

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Sounds to me like you have a good doctor and one you can trust with good care. I don’t have that good doctor/trust and may have to search for new one but they are starting to have to deal with many people with long effects of COVID so may be hard to switch. I’m so glad you made it out of ER and back home again. I can’t imagine dealing with all this plus spouse w/Alzheimer’s but you still have a lot going for you. It’s all of a sudden becoming such a different world for me and one I have to adjust to. Take great care Lizzier.

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lizzier | @lizzier | Jul 18, 2021

You take care also. It's been raining for days in Maine, and we're not having my favorite weather 72 degrees and a slight breeze. LOL. We're running around between rain outbreaks. Big torrential downfalls. I think the trees grow a foot every day. Soaking up what we didn't have this past year, even in snow. It's been very odd. So we run out and transplant something between storms. Me in my rollator. It's got to be a site to see .... two old people doing crazy things. BUT...the new garden will be lovely and the neighbors know we're a bit crazy. Have a good day.

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golfbarmie | @golfbarmie | Jul 18, 2021
In reply to @scpartain "I'm sorry you have PMR at such a young age. I have just recovered from my..." + (show)
@scpartain

I'm sorry you have PMR at such a young age. I have just recovered from my second bout of PMR. The first appeared thirteen years ago when I was 62. It resolved completely within six months and I was free of pain until I received my first Covid vaccine in January of this year, when I experienced a severe recurrence. With the help of a skilled rheumatologist, I was able to bring the symptoms under control in a few days and I am now in the process of tapering off of prednisone, which is, in my experience, the only effective treatment. I have continued to feel better, even though I am decreasing the prednisone at two-week intervals. The most recent lab results verify that the inflammation has resolved. I hope your journey with PMR will end in a successful resolution and that you will not have any recurrences. Sending my very best wishes to you for healing and recovery.

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I have had a similar PMR experience to you. Bad reaction after 1st Moderna. Upped from 3mg pred to 7.5mg, and good blood numbers and now at 6mg felling good, (relatively). Big question is though, ARE WE PROTECTED FROM COVID?

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1 reply
martiesowers | @martiesowers | Jul 18, 2021

I am currently taking 24mg of methylprednisolone. I was taking 16 but flareups were occurring. My doc wants me to try to get back to 16mg - I tried and after 3 days I had a flare. So I went back to 24 and decreased to 20mg - 3 days later the pain came back so I increased again to 24mg. Today is day 3 on 24mg after the flare and tomorrow I will try again to go down t0 20mg on the way to getting down to 16mg. I am also taking methotrexate injections (0.52) weekly but had to stop this week because of medications for a sinus infection. I have a hot tub and using it every night seems to help. But I certainly wish I could sleep - never slept last night until 6am this morning and then only for 4 hours! On the plus side I got a lot of housework done!

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2 replies
scpartain | @scpartain | Jul 18, 2021
In reply to @golfbarmie "I have had a similar PMR experience to you. Bad reaction after 1st Moderna. Upped from..." + (show)
@golfbarmie

I have had a similar PMR experience to you. Bad reaction after 1st Moderna. Upped from 3mg pred to 7.5mg, and good blood numbers and now at 6mg felling good, (relatively). Big question is though, ARE WE PROTECTED FROM COVID?

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I’m going on the assumption that we are. However, no one knows for sure. I’m glad you are feeling better.

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2 replies
golfbarmie | @golfbarmie | Jul 18, 2021
In reply to @scpartain "I’m going on the assumption that we are. However, no one knows for sure. I’m glad..." + (show)
@scpartain

I’m going on the assumption that we are. However, no one knows for sure. I’m glad you are feeling better.

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That would be bold assumption, maybe even a tad risky, given the science saying prednisone causes us to be immunosuppressed thereby countering vaccines. Sorry to be a spoil sport.
I tend to be a bit cautious.

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scpartain | @scpartain | Jul 18, 2021
In reply to @golfbarmie "That would be bold assumption, maybe even a tad risky, given the science saying prednisone causes..." + (show)
@golfbarmie

That would be bold assumption, maybe even a tad risky, given the science saying prednisone causes us to be immunosuppressed thereby countering vaccines. Sorry to be a spoil sport.
I tend to be a bit cautious.

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I’m basing my assumption partly on the strong immune system response I had that triggered the PMR.

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