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.

scpartain | @scpartain | May 7, 2021

I am very glad to have found this group. I was recently diagnosed with PMR that came on suddenly after receiving the Pfizer vaccine for Covid-19. It is helpful to get advice and insight from others who suffer from the ailment.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 7, 2021
In reply to @miriamgray1 "Hi Marianne - so sorry to hear you’ve had a relapse. I’m also new to this..." + (show)
@miriamgray1

Hi Marianne - so sorry to hear you’ve had a relapse. I’m also new to this site. I developed PMR like symptoms following my first Pfizer jab. I also had a chest infection so was not out on prednisolone for 8 weeks. I started off at 20mgs abd am now down to 10mgs for 6 weeks and then to 5mg/10mgs on alternate days, but have noticed shoulder aches and swelling in hands again.
Am guessing there is definitely a link to the vaccine and have been advised not to have a 2nd. As I said I am new to all this and finding my way but reassuring to read other people’s stories
All the best
Kate

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Hello @miriamgray1, Welcome to Mayo Clinic Connect. I'm sorry to hear you also had PMR like symptoms after your 1st Pfizer vaccine. One of the keys to tapering prednisone is to do it slowly as many of us have found out by experience. Have you been diagnosed with PMR by a rheumatologist?

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | May 7, 2021
In reply to @scpartain "I am very glad to have found this group. I was recently diagnosed with PMR that..." + (show)
@scpartain

I am very glad to have found this group. I was recently diagnosed with PMR that came on suddenly after receiving the Pfizer vaccine for Covid-19. It is helpful to get advice and insight from others who suffer from the ailment.

Jump to this post

Hello @scpartain, Welcome to Mayo Clinic Connect. Sorry to hear you were also recently diagnosed with PMR after receiving the Pfizer vaccine. Did your doctor or rheumatologist start you on prednisone?

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1 reply
peggyp | @peggyp | May 7, 2021
In reply to @johnbishop "@ingekunga and @daisy12345 - I can't say that I understand all of this information but it..." + (show)
@johnbishop

@ingekunga and @daisy12345 - I can't say that I understand all of this information but it does talk about the role of the adrenal glands while your PMR is active.

Adrenal gland hypofunction in active polymyalgia rheumatica. effect of glucocorticoid treatment on adrenal hormones and interleukin 6 - https://pubmed.ncbi.nlm.nih.gov/11950017/
Adrenal insufficiency in treated PMR: The tip of the iceberg - https://www.endocrine-abstracts.org/ea/0056/ea0056p44

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@johnbishop and @ingelimga amd @daisy12345 - Here is another website concerning adrenal glands and PMR: leedsth.nhs.uk/assets/be1c3...

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daisy12345 | @daisy12345 | May 7, 2021
In reply to @miriamgray1 "Hi Marianne - so sorry to hear you’ve had a relapse. I’m also new to this..." + (show)
@miriamgray1

Hi Marianne - so sorry to hear you’ve had a relapse. I’m also new to this site. I developed PMR like symptoms following my first Pfizer jab. I also had a chest infection so was not out on prednisolone for 8 weeks. I started off at 20mgs abd am now down to 10mgs for 6 weeks and then to 5mg/10mgs on alternate days, but have noticed shoulder aches and swelling in hands again.
Am guessing there is definitely a link to the vaccine and have been advised not to have a 2nd. As I said I am new to all this and finding my way but reassuring to read other people’s stories
All the best
Kate

Jump to this post

Wow Kate, now I am wondering if mine is related to the vaccine. So much to learn about vaccines. I got a shingles vaccine last week and I believe it has increased my fatigue. Hearing people’s stories is so validating. Thank you and good luck.

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1 reply
cody0623 | @cody0623 | May 7, 2021

I had my second Pfizer COVID vaccine yesterday and my PMR symptoms flared again last night. It wasn't as bad as it was after the first vaccine. Still on 10mg Prednisone. My Rheumatologist is scheduling a full-body pet scan to see if something else is causing my pain and weakness. I guess she's still not convinced that I just have PMR because my Sed rate went from 9 to 6, and my CRP went from 6.8 to 8.1. Any others had, or going to have a pet scan to see what causing pain?

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terrydeg | @terrydeg | May 8, 2021
In reply to @scpartain "I am very glad to have found this group. I was recently diagnosed with PMR that..." + (show)
@scpartain

I am very glad to have found this group. I was recently diagnosed with PMR that came on suddenly after receiving the Pfizer vaccine for Covid-19. It is helpful to get advice and insight from others who suffer from the ailment.

Jump to this post

I got PMR after Moderna vaccine.

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peggyp | @peggyp | May 8, 2021
In reply to @ingekunga "I am very interested in any information about adrenal glands not functioning especially any pred reduction..." + (show)
@ingekunga

I am very interested in any information about adrenal glands not functioning especially any pred reduction schedule that is better to avoid this.

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@ingekunga @daisy Prednisone reduction. Below 10 mgs you should reduce by 1/2 mg.and/or no more than 10%. Pred reduction schedule from Dorset Lady: week 1: Sunday/Thur new dose; week 2: Sun/Tu/Thur new dose; week 3: SunTuWThu new dose; week 4: SunTuWThu &Sat new dose; week 5: all days new dose.
The above schedule is easy to stop if you find you are getting PMR pain.Once completed you should stay on the new dose until you are sure there is no flare. I am in my fifth year of PMR and have stayed at 3 1/2 mgs as I have other conditions that cause pain. My doctor has recommended staying at this dose as it is low enough not to cause negative effects. Some patients remain on 2 or 3 mgs for years.

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1 reply
miriamgray1 | @miriamgray1 | May 8, 2021
In reply to @johnbishop "Hello @miriamgray1, Welcome to Mayo Clinic Connect. I'm sorry to hear you also had PMR like..." + (show)
@johnbishop

Hello @miriamgray1, Welcome to Mayo Clinic Connect. I'm sorry to hear you also had PMR like symptoms after your 1st Pfizer vaccine. One of the keys to tapering prednisone is to do it slowly as many of us have found out by experience. Have you been diagnosed with PMR by a rheumatologist?

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Hi John - yes I have been seen and diagnosed by a rheumatologist who has advised against 2nd vaccination.
He also wants to reduce dosage slowly to prevent a relapse but I am struggling with steroids. Never know from one day to the next how I will feel. Getting terrible headaches and still have aches in shoulders. Also have had a hideous infection in my sinuses so on antibiotics (4weeks). Not sure if this is to be expected as an new to this! So many unanswered questions!
Kate

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miriamgray1 | @miriamgray1 | May 8, 2021
In reply to @daisy12345 "Wow Kate, now I am wondering if mine is related to the vaccine. So much to..." + (show)
@daisy12345

Wow Kate, now I am wondering if mine is related to the vaccine. So much to learn about vaccines. I got a shingles vaccine last week and I believe it has increased my fatigue. Hearing people’s stories is so validating. Thank you and good luck.

Jump to this post

Sadly - so many unknowns. My PMR symptoms started within 24 hours of my Pfizer jab. I have never had PMR before . It’s pretty brutal abd am trying to manage it. It’s all been a bit if a shock to go from being very physically active to being able to do so little. One day at a time!
Good luck with everything
Kate

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