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.

@izzie1020

I also developed PMR seven days after my 2nd Moderna booster. No doctor will say that there was a connection but neither will they rule it out. I decided against a flu shot or another Covid booster at present. I started 15 mg of Prednisone in September and am currently at 9 mg. I will see what my rheumatologist says in March. Meanwhile I’m being careful with crowds and wearing a mask when necessary. I’m just nervous that vaccines right now will cause a flare up.

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Hello,
I always weigh the risks and benefits or at least try too. I did have the flu shot and had no side effects. Cannot say the same about the Covid booster but then again, was it the booster or “ in the cards.” My PMR diagnosis is fairly new and still navigating the waters, however I am convinced that diet plays a key role in controlling symptoms.

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@smj

I developed PMR after my Pfizer booster shot for Covid. I had never reacted to immunisation before. I had instant results with 10 mg prednisone and decreased by 1 mg per month. I am down to 1 mg tomorrow and have to decide whether to get another Covid booster and/or flu shot. Any experiences to share out there? Thank you.

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I also developed PMR not long after my last COVID booster in early July 2022. I have a moderate case, which I have been managing without prednisone so I don't know how that factors into vaccines. That said, my doctor advised not getting the COVID booster for now but I did get a flu shot last week and there were no flare ups.

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@froehlich22

Hello,
I always weigh the risks and benefits or at least try too. I did have the flu shot and had no side effects. Cannot say the same about the Covid booster but then again, was it the booster or “ in the cards.” My PMR diagnosis is fairly new and still navigating the waters, however I am convinced that diet plays a key role in controlling symptoms.

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Hello,
I guess we will never know for sure if PMR was just waiting to emerge or that a vaccine pushed it over the edge. However now we are stuck with it! I think diet does play a part in getting better. I’m making a conscious effort to eat less carbs as being on prednisone definitely makes one hungrier.

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I was diagnosed with PMR in late-November. First, right shoulder swole and arm barely functioned; took ibuprofen for two weeks, but meanwhile left shoulder began to hurt and right breastbone began to swell, then one day I couldn't raise my leg. Internist made preliminary diagnosis and drew blood and put me on prednisone immediately. Pain eliminated in less than 24 hours. Confirmed preliminary diagnosis the following week because of 129% sedimentation rate. Tapered me down to 30 mgs of prednisone, but became slightly symptomatic again. Have shaky hands, want to eat all the time, crave sweets, getting faint beginnings of round face. Breastbone continues to swell and retract.

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@izzie1020

Hello,
I guess we will never know for sure if PMR was just waiting to emerge or that a vaccine pushed it over the edge. However now we are stuck with it! I think diet does play a part in getting better. I’m making a conscious effort to eat less carbs as being on prednisone definitely makes one hungrier.

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Yes, although I love sweets, I have made a conscientious effort to eliminate as much as I can because you are right, the hunger never ends! Hard around this time of year. I’ve also cut out red meats.
Are you finding that hydration also determines how you feel in the am?

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@froehlich22

Yes, although I love sweets, I have made a conscientious effort to eliminate as much as I can because you are right, the hunger never ends! Hard around this time of year. I’ve also cut out red meats.
Are you finding that hydration also determines how you feel in the am?

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Feel about the same in the am. So far all the pain is gone but I’m still on 9 mg of Prednisone. Just started with 15 mg in September so I have awhile to go. Every time I get some new symptom, I worry about getting the GCA sister of PMR. I have slight headaches along with runny nose but they never get worse - think it’s probably winter allergies. My eyes get irritated but I think it’s due to my corneas being roughed up as per my eye doctor. Just had cataract surgery in both eyes so it takes awhile to get back to normal. I just hate all the uncertainties but that’s life. Stay strong and well.

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@meredith101

I also developed PMR not long after my last COVID booster in early July 2022. I have a moderate case, which I have been managing without prednisone so I don't know how that factors into vaccines. That said, my doctor advised not getting the COVID booster for now but I did get a flu shot last week and there were no flare ups.

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Thank you for sharing. Good to know about the flu not causing a flare up. I may start with that. Decisions, decisions.

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@izzie1020

Hello,
I guess we will never know for sure if PMR was just waiting to emerge or that a vaccine pushed it over the edge. However now we are stuck with it! I think diet does play a part in getting better. I’m making a conscious effort to eat less carbs as being on prednisone definitely makes one hungrier.

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I’m in the same boat! Tomorrow I begin to taper by 1/2 tablet every other day. Hope it works.

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@froehlich22

Yes, although I love sweets, I have made a conscientious effort to eliminate as much as I can because you are right, the hunger never ends! Hard around this time of year. I’ve also cut out red meats.
Are you finding that hydration also determines how you feel in the am?

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Thank you for reinforcing the dietary. How are you feeling overall? How long have you had pmr? How much pred are you on? I see doc in a few hours to see if sed rate has gone down.

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@froehlich22

Yes, although I love sweets, I have made a conscientious effort to eliminate as much as I can because you are right, the hunger never ends! Hard around this time of year. I’ve also cut out red meats.
Are you finding that hydration also determines how you feel in the am?

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Ah yes, the craving for food, especially sweets! I keep dates and walnuts around all the time. The dates satisfy that craving for sweets and do have good fiber, and the walnuts really help satisfy that feeling of hunger.

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