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

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.

@cody0623

I was diagnosed with PMR one year ago and my rheumatologist started me on 10mg Prednisone. It immediately calmed the flare up. I've been tapering down since then and 3 weeks ago was down to 1mg/day. That's when I got my first Pfizer COVID vaccine. My PMR flared up significantly the next day. My doctor increased my Prednisone to 3mg/day, but it didn't help the pain. She then increased to 10mg/day and it still isn't helping. I'm scheduled for my second vaccine this week, but am concerned with how it has been affecting my PMR. My pain is severe and I have no energy. Ibuprofen, 5mg Hydrocodone or 50mg Tramadol help on the bad days. The pain medicine was left over from hip replacement surgery 3 months ago.

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I was diagnosed in October 2020. Started at 15mg Prednisone. Have been tapering and am now at 5mg. Had my first Pfizer Covid vaccine and everything was fine - just sore arm. Had my second almost three weeks ago. Within two weeks I was having some shoulder pain, some finger joint pain, etc. It seems to be settling down now. Rheumatologist wants me to stay at 5mg until she sees me again in June. Oh and one more thing, I had blood work done last week to checking my markers and my sediment rate had gone up from 22 two months ago to 36...

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@susan63

I was diagnosed in October 2020. Started at 15mg Prednisone. Have been tapering and am now at 5mg. Had my first Pfizer Covid vaccine and everything was fine - just sore arm. Had my second almost three weeks ago. Within two weeks I was having some shoulder pain, some finger joint pain, etc. It seems to be settling down now. Rheumatologist wants me to stay at 5mg until she sees me again in June. Oh and one more thing, I had blood work done last week to checking my markers and my sediment rate had gone up from 22 two months ago to 36...

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I was 6 weeks off Prednisone when I got my second Moderna vaccine. Now my ESR and CRP are elevated - and I’m weak and in pain. Waiting for a few more test results; but my guess is PMR is back. 😕

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Hi, I am new to this chat and have had PMR fit 5 years. Post Pfizer vaccine developed severe shoulder inflammation in the arm injected requiring cortisone shot. A month after second vaccine had a relapse requiring going back up to 5 mgm from 1 mgm every 6 days. I have been trying to titration off prednisone for several months. I wonder if this is all related to the vaccine. This is a terrific site. Thank you! Marianne

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@daisy12345

Hi, I am new to this chat and have had PMR fit 5 years. Post Pfizer vaccine developed severe shoulder inflammation in the arm injected requiring cortisone shot. A month after second vaccine had a relapse requiring going back up to 5 mgm from 1 mgm every 6 days. I have been trying to titration off prednisone for several months. I wonder if this is all related to the vaccine. This is a terrific site. Thank you! Marianne

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Hello Marianne @daisy12345, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. My PMR has been in remission for a few years. I have had both Pfizer vaccines and received my second shingles vaccine yesterday and feel lucky to only have the "normal" side effects of a sore arm and some fatigue after the second day of the second Pfizer shot. You are not alone though, others here have reported an autoimmune flare up after receiving the vaccines and have posted about their experience in the following discussion.

Polymyalgia Rheumatica (PMR), prednisone and Coronavirus COVID-19: https://connect.mayoclinic.org/discussion/coronavirus-and-pmr/

There's also information available supporting the relationship to flu vaccines in general.
-- Polymyalgia Rheumatica After Influenza Vaccine: https://www.journalmc.org/index.php/JMC/article/view/2788/2121
-- Relapse of polymyalgia rheumatica following adjuvanted influenza vaccine: A case-based review: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7002008/

Has your rheumatologist suggested a new tapering schedule for getting off of prednisone?

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Hi John, yes I have a new prednisone regime tapering every two weeks. He did say to me that some folks’ adrenal gland stops functioning and I wondered if anyone has heard that? Thank you for the welcome! And thank you for the links. Very helpful.

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@daisy12345

Hi John, yes I have a new prednisone regime tapering every two weeks. He did say to me that some folks’ adrenal gland stops functioning and I wondered if anyone has heard that? Thank you for the welcome! And thank you for the links. Very helpful.

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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

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 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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This certainly validates what my Dr. said...thanks so very much.

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@daisy12345

Hi, I am new to this chat and have had PMR fit 5 years. Post Pfizer vaccine developed severe shoulder inflammation in the arm injected requiring cortisone shot. A month after second vaccine had a relapse requiring going back up to 5 mgm from 1 mgm every 6 days. I have been trying to titration off prednisone for several months. I wonder if this is all related to the vaccine. This is a terrific site. Thank you! Marianne

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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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@priscillat

I was 6 weeks off Prednisone when I got my second Moderna vaccine. Now my ESR and CRP are elevated - and I’m weak and in pain. Waiting for a few more test results; but my guess is PMR is back. 😕

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I developed PMR after receiving the Pfizer vaccine.

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