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.

Is the alternate day doses of prednisone a good way to go at the lower end coming down from 2 mg what would people suggest 2 mg 1.5 alternate ? Or?

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@peggyp

@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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Thank you - my doctor also says ok to stay on 2 or 3 long time - I feel there are skin and hair side effects and just not quite feeling ‘me’ but of course that could be many other things. I have always been reluctant to take long term medecins so partly psychological

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@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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Thank you so much!

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@ingekunga

Is the alternate day doses of prednisone a good way to go at the lower end coming down from 2 mg what would people suggest 2 mg 1.5 alternate ? Or?

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I went from 2 mg a day to 1 mg a day. I couldn't cut them into halves without crumbling, so after a month or so on 1 mg started eliminating one day a week at a time, say leaving out Wednesday, then a few weeks later leaving out Saturday, etc. util taking just one day a week then stopping compleetely. It worked well.

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@heretaunga1947

I went from 2 mg a day to 1 mg a day. I couldn't cut them into halves without crumbling, so after a month or so on 1 mg started eliminating one day a week at a time, say leaving out Wednesday, then a few weeks later leaving out Saturday, etc. util taking just one day a week then stopping compleetely. It worked well.

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That’s a great idea!

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@johnbishop

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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Yes, 10 mg. per day. It helps but I am still having intense pain in the mornings for several hours. Later in the day things are almost normal.

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@johnbishop

That’s a great idea!

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@heretaunga1947, I forgot to mention the first few times I tried splitting the 1 mg tablets I also crumbled them pretty good until I saw that each tablet had scoring line down the middle. If you place the tablet in the pill splitter with the line directly under the blade it will split with very little crumbling. Still it can be difficult and your tip is a good suggestion if it's a problem to split the pills.

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@scpartain

Yes, 10 mg. per day. It helps but I am still having intense pain in the mornings for several hours. Later in the day things are almost normal.

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@scpartain - Can you discuss increasing the dosage with your doctor/rheumatologist? From what I've read and my experience with the 2 occurrences of PMR, the standard starting dose of prednisone for PMR is 20 mg. At 20 mg I had zero pain fairly quickly after taking the prednisone. Other members may want to weigh in with their experience also. The pain starts coming back when you start tapering off the drug which is why it's done slowly. Also, each of us are really different when it comes to pain and tapering off of prednisone.

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@johnbishop

@scpartain - Can you discuss increasing the dosage with your doctor/rheumatologist? From what I've read and my experience with the 2 occurrences of PMR, the standard starting dose of prednisone for PMR is 20 mg. At 20 mg I had zero pain fairly quickly after taking the prednisone. Other members may want to weigh in with their experience also. The pain starts coming back when you start tapering off the drug which is why it's done slowly. Also, each of us are really different when it comes to pain and tapering off of prednisone.

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Yes, I plan to discuss it with the rheumatologist on Wednesday May 12 when I have an appointment. I plan to ask that the dosage be increased to a level where the pain is gone, or at least down to an acceptable level. This is not my first bout of PMR. I believe it began in 2008 when I had severe pain in my neck, shoulders, hips, and thighs. I thought at the time that the pain was caused by PMR but couldn't get a definitive diagnoses from the doctors I saw. After about six months the pain gradually left and I wasn't bothered by it until this year when I received the Pfizer vaccine which I believe caused it to flare again.

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@ingekunga

Thank you - my doctor also says ok to stay on 2 or 3 long time - I feel there are skin and hair side effects and just not quite feeling ‘me’ but of course that could be many other things. I have always been reluctant to take long term medecins so partly psychological

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@ingekunga, A collagen peptide supplement may help with the skin and hair side effects. My wife and I both take a tablespoon mixed with water or any beverage daily. It dissolves easily and is tasteless. It has fixed the brittle fingernails for both of us and is also good for skin, joints and hair. I would discuss it with your doctor first. I was on prednisone for 3-1/2 years the first round with PMR and 1-1/2 years the second time around. I was always concerned with my skin being thin and easily bruised.

Here's some more information:
Daily oral supplementation with collagen peptides combined with vitamins and other bioactive compounds improves skin elasticity and has a beneficial effect on joint and general wellbeing: https://www.sciencedirect.com/science/article/abs/pii/S0271531717311508

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