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.

@priscillat

So good to hear that; I have been wondering. I was 1 month off prednisone and doing great, when I got my second Moderna shot. Four days later, I knew I had a PMR flare up, although it was not reflected in CRP and ESR counts for a month. Started 20 mg of Prednisone 6 weeks after Moderna vaccine, so I’ve been hoping I had a chance to develop antibodies to COVID-19.

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Hello—I rec’d #2 shot 4/23/21–had antibody test 5/28/21 with positive result for antibodies. Good luck to you!! Hope your flare resolved quickly.

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@josteman

Hi,
I’m Steve, 67, still working. I was diagnosed with PMR almost 6 years ago. I’ve had been on 2 mg of Preds for a while it seems to be my threshold. I just recently went up another half to 2.5 after some shoulder pains. What brought me to this site was I took the 1st dose of the Moderna vaccine for protection against COVID 19. I was good for about 4 days after the shot then came what seems to be a relapse of PMR. I thought that any side effects would be the next day after the vaccine. Just wondering if anyone has had PMR related side effects from the Moderna vaccine. I’m thankful the this site is available, it kinda lessens the effect of being stranded on the PMR island. Thanks in advance for any input.

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I had the 1st Moderna Vax in late January and then had my first encounter with severe inflammation of shoulders and hips a few days later — diagnosis is PMR. I am curious if you went back for a second vaccination with Moderna? And if so, what happened?

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I'm new to this medium and a bit lost. PMR since January. Seeing a rheumatologist in Indy. Feeling fine after starting with 40 mg Prednisone, now tapering back to just 2 mg daily this month. I both attend and occasionally teach Yoga practice which helps tremendously. Walk about two miles daily. Scared to death of possible temporal arteritis. My stress level is in the clouds. Feel best when very busy and engaged in physical activity such as yard work. Looking for comments and support.

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@cgent

I'm new to this medium and a bit lost. PMR since January. Seeing a rheumatologist in Indy. Feeling fine after starting with 40 mg Prednisone, now tapering back to just 2 mg daily this month. I both attend and occasionally teach Yoga practice which helps tremendously. Walk about two miles daily. Scared to death of possible temporal arteritis. My stress level is in the clouds. Feel best when very busy and engaged in physical activity such as yard work. Looking for comments and support.

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Hello @cgent, Welcome to Connect. Thank you for sharing your experience with PMR. It's great to hear you are down to 2 mg prednisone since diagnosed in January. Slow and easy is a good way to taper and exercise really helps. Stress can make things worse so I'm guessing staying busy helps keep your mind away from worrying about temporal arteritis. From what I've read about 15% of people with polymyalgia rheumatica also have temporal arteritis which is about 1 in 5 odds of developing temporal arteritis if you have PMR.

I think it's important to keep doing what you are doing and be able to recognize the symptoms of temporal arteritis (https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758) so that you can address it early. When I first was diagnosed with PMR my rheumatologist and my primary care doctor would always ask me if I had any pain or tenderness in the scalp area or temples which would be an indicator among other symptoms.

It sounds like you live a pretty healthy lifestyle, have you made any other changes since being diagnosed with PMR?

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@johnbishop

Hello @cgent, Welcome to Connect. Thank you for sharing your experience with PMR. It's great to hear you are down to 2 mg prednisone since diagnosed in January. Slow and easy is a good way to taper and exercise really helps. Stress can make things worse so I'm guessing staying busy helps keep your mind away from worrying about temporal arteritis. From what I've read about 15% of people with polymyalgia rheumatica also have temporal arteritis which is about 1 in 5 odds of developing temporal arteritis if you have PMR.

I think it's important to keep doing what you are doing and be able to recognize the symptoms of temporal arteritis (https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758) so that you can address it early. When I first was diagnosed with PMR my rheumatologist and my primary care doctor would always ask me if I had any pain or tenderness in the scalp area or temples which would be an indicator among other symptoms.

It sounds like you live a pretty healthy lifestyle, have you made any other changes since being diagnosed with PMR?

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Thanks for the reply ... Tom here. What bothers me most currently is that I have tiny but noticeable sore spots above my left ear, think they are just pimples from an oily scalp as a result of Prednisone. I worry too much about constant details. Thank you for replying John. Like to hear more from you to discuss beginning and ... hopefully ... ending of PMR

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@cgent

Thanks for the reply ... Tom here. What bothers me most currently is that I have tiny but noticeable sore spots above my left ear, think they are just pimples from an oily scalp as a result of Prednisone. I worry too much about constant details. Thank you for replying John. Like to hear more from you to discuss beginning and ... hopefully ... ending of PMR

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I was first diagnosed with PMR in 2007 and started 20 mg prednisone. Took about 3-1/2 years to taper off prednisone. The last six months I went between 1 mg and 1/2 mg until I could finally stop taking it with only minor aches. The PMR stayed in remission until 2016 and again I started 20 mg prednisone. I was able to taper off in about 1-1/2 years and I’m hoping it stays in remission. I have learned to change my lifestyle some to help - exercising more and eating healthier. I had a friend about my age that was diagnosed with PMR about the same time as myself in 2007. He was off of prednisone within a year and it hasn’t returned. I guess I can chalk it off to we are each a little different in the way it affects us.

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@mimik211

Hello—I was diagnosed with PMR in Aug 2019. Started with a blast of pred— dramatic results—could raise my arms, turn my head, get out of bed—a miracle!! Went on 20 mg pred—tried to taper off too fast—@ 11.5 had to go back up to 15mg to address symptoms. Now @ 10 mg—was on 10 mg when I received both Moderna shots—had flare 2weeks after #2 shot, but it was manageable & didn’t increase pred dosage. Just received results from antibody test & good news—I did develop antibodies!! Thought I’d pass this along. Take care.

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Yours is the first I’ve read to mention being tested for antibodies after vaccination. Was that test ordered by your Dr because there was a concern you might not have made antibodies? Was that question about antibodies a concern because you were still on Prednisone? I guess the prednisone suppresses an inflammatory response so it may hinder the creation of antibodies?! I am still on 15-20mg and Considering getting the second Moderna shot. ( First shot in Jan triggered my initial PMR episode.)

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@johnbishop

Hello @cgent, Welcome to Connect. Thank you for sharing your experience with PMR. It's great to hear you are down to 2 mg prednisone since diagnosed in January. Slow and easy is a good way to taper and exercise really helps. Stress can make things worse so I'm guessing staying busy helps keep your mind away from worrying about temporal arteritis. From what I've read about 15% of people with polymyalgia rheumatica also have temporal arteritis which is about 1 in 5 odds of developing temporal arteritis if you have PMR.

I think it's important to keep doing what you are doing and be able to recognize the symptoms of temporal arteritis (https://www.mayoclinic.org/diseases-conditions/giant-cell-arteritis/symptoms-causes/syc-20372758) so that you can address it early. When I first was diagnosed with PMR my rheumatologist and my primary care doctor would always ask me if I had any pain or tenderness in the scalp area or temples which would be an indicator among other symptoms.

It sounds like you live a pretty healthy lifestyle, have you made any other changes since being diagnosed with PMR?

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So can anyone explain about the relevance of inflammation and pain as I try to taper prednisone down (started at 40mg early Feb this year to 15-20mg currently). Although I was feeling some manageable pain and soreness as I went down, my Dr ordered SED and CRP labs which showed elevated levels and he told me to increase my dosage and wait another 2 weeks or more before resuming reductions. But if I can tolerate the pain, why can’t I continue lowering my prednisone? What is the issue or why is there any worry regarding how high inflammation levels are? The side effects of Prednisone are more troubling to me right now than the PMR. But if inflammation is the greater concern I’d like to know what’s at risk.

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@2heal

Yours is the first I’ve read to mention being tested for antibodies after vaccination. Was that test ordered by your Dr because there was a concern you might not have made antibodies? Was that question about antibodies a concern because you were still on Prednisone? I guess the prednisone suppresses an inflammatory response so it may hinder the creation of antibodies?! I am still on 15-20mg and Considering getting the second Moderna shot. ( First shot in Jan triggered my initial PMR episode.)

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My doc ordered the antibody test to confirm that my 2yr stint on varying dosages of pred (I’m still on 10-10.5 mg, but tapering) did not interfere with developing COVID antibodies after having rec’d 2 vac shots. I was concerned with how to protect myself if I hadn’t developed any antibodies.
Hope you’re doing well...Take care.

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@cgent

I'm new to this medium and a bit lost. PMR since January. Seeing a rheumatologist in Indy. Feeling fine after starting with 40 mg Prednisone, now tapering back to just 2 mg daily this month. I both attend and occasionally teach Yoga practice which helps tremendously. Walk about two miles daily. Scared to death of possible temporal arteritis. My stress level is in the clouds. Feel best when very busy and engaged in physical activity such as yard work. Looking for comments and support.

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I feel your perspective. Wow, you are so fortunate to be at 2 mg in just6 months. That is remarkable. I can asset to getting GCA symptoms and it did freak me out. I had to go back up to 20 mg and am tapering very very slowly. I’m at 7.5 and will only taper by .5 mg / month.
Just be aware of pain in head, in my case it felt like bruising not a
“ headache” and jaw discomfort and visual distortion. If you’re at 2 mg you are well on your way. Try not to obsess about the GCA, I know it’s very frightening. Keep up the good work!

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