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.

Hi great to have people to talk to. I am at the low end of reducing pred down and finding it quite difficult went back up to 2 mg. Now wanting to start down again maybe even by .25 at a time. I wonder is there anything one can do to support the adrenal glands to kick back in ?

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@johnbishop

Hi @ingekunga, Depending on the day, I had a problem deciding on the pain level also. I think that's normal since each of us are not the same with pain levels. I think there are other members here in the discussion who have varied the dose or split it between morning and evening to see if it helped with their pain levels and tapering. I never had a pill splitter good enough to split the 1 mg tablet twice to get the .25 mg dose. Hoping you and all of our PMR friends have a pain free day!

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My pill splitter is good ... still pain free day would be a bit strong a description...hope everyone managing ok

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@ingekunga

Hi great to have people to talk to. I am at the low end of reducing pred down and finding it quite difficult went back up to 2 mg. Now wanting to start down again maybe even by .25 at a time. I wonder is there anything one can do to support the adrenal glands to kick back in ?

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Hi @ingekunga, I think your question is a good one and that it helps with any autoimmune condition. I have no medical training or background but what I believe has helped me with keeping my PMR in remission is changing some of my lifestyle habits - eliminating fast foods and processed foods, sugar and getting more exercise. I do have my slip ups though but I do my best to keep away from unhealthy eating habits. Here are some things that may help.

Adrenal Fatigue Treatment: https://www.healthline.com/health/adrenal-fatigue-treatment
Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

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@johnbishop

Hi @ingekunga, I think your question is a good one and that it helps with any autoimmune condition. I have no medical training or background but what I believe has helped me with keeping my PMR in remission is changing some of my lifestyle habits - eliminating fast foods and processed foods, sugar and getting more exercise. I do have my slip ups though but I do my best to keep away from unhealthy eating habits. Here are some things that may help.

Adrenal Fatigue Treatment: https://www.healthline.com/health/adrenal-fatigue-treatment
Can Diet Affect Symptoms of Polymyalgia Rheumatica?: https://www.healthline.com/health/polymyalgia-rheumatica-diet

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Reducing stress in your life in whatever ways that you have control over, trying to eat food as if it were your only medication and not just for comfort and taste appeal, getting outside for as walks, jogs, bike rides at as vigorous pace that you are comfortable with. I'm 65 was hit with full case of PMR 2 months ago, down to 12.5 Prednisone and trying to deal with the mood fluctuations and early waking. mybodymindconnection.net

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@mpstetson1

Reducing stress in your life in whatever ways that you have control over, trying to eat food as if it were your only medication and not just for comfort and taste appeal, getting outside for as walks, jogs, bike rides at as vigorous pace that you are comfortable with. I'm 65 was hit with full case of PMR 2 months ago, down to 12.5 Prednisone and trying to deal with the mood fluctuations and early waking. mybodymindconnection.net

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Hello @mpstetson1, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. You offer some sound and great advice for whatever ails you, including PMR. You sound like you are doing great with tapering down on the Prednisone since it's only been 2 months since the PMR treatment was started.

Did you start at 20 mg dose of Prednisone? Do you keep a daily pain scale and dosage log to record how you are feeling each day and what dosage you are at?

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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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@johnbishop

Hello @mpstetson1, Welcome to Mayo Clinic Connect, a welcoming online community where patients and caregivers share their experiences, find support and exchange information with others. You offer some sound and great advice for whatever ails you, including PMR. You sound like you are doing great with tapering down on the Prednisone since it's only been 2 months since the PMR treatment was started.

Did you start at 20 mg dose of Prednisone? Do you keep a daily pain scale and dosage log to record how you are feeling each day and what dosage you are at?

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Yes Rheumatologist started me at 20mg which took immediate effect, have been reducing by 2.5 every 2-4 weeks and the 12.5 is still effective, but still the restless, early wake ups and mood fluctuactions

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@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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15 TO 25 mgs prednisone is the usual starting dose for PMR, dependent upon one's weight. You have reduced too fast--and perhaps you have not taken enough to wipe up all the inflammation created by PMR. Very few get over PMR in two years. Average length is 5.9 years. Pred takes place of the cortisol produced by your adrenal glands. It sometimes takes a year for adrenals to wake up and again produce cortisol which equals 5 to 7 mgs pred. Ibuprofen is not recommended to take along with prednisone.

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@peggyp

15 TO 25 mgs prednisone is the usual starting dose for PMR, dependent upon one's weight. You have reduced too fast--and perhaps you have not taken enough to wipe up all the inflammation created by PMR. Very few get over PMR in two years. Average length is 5.9 years. Pred takes place of the cortisol produced by your adrenal glands. It sometimes takes a year for adrenals to wake up and again produce cortisol which equals 5 to 7 mgs pred. Ibuprofen is not recommended to take along with prednisone.

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I had never heard about not taking ibuprofen with prednisone. I occasionally take a tablet for something other than PMR pain. What is the reason for not taking it?

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@virginiaj

I had never heard about not taking ibuprofen with prednisone. I occasionally take a tablet for something other than PMR pain. What is the reason for not taking it?

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If you google the issue: " You shouldn’t take ibuprofen with prednisone unless your doctor has told you to do so. The two together increase the risk of a stomach or duodenal ulcer developing."

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