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.

@munchie

the more i read about pmr and the more i have my own experiences i have come to the conclusion this is a tricky disease..i was doing well on taper from 20 to 7.5 when i relapsed and had to return 20 which was inadequate..now on 25mg for4 days with relief of pain and increased mobility of hip joints..however i too suffer greatly from severe fatigue which my rheumatologist says is not characteristic of pmr --i totally disagree but dont won't to come off as an arrogant dr/patient

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I totally agree that fatigue and PMR are related. I too have severe fatigue and was diagnosed with PMR Nov. 2019.

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@bunkysmum78

Yes, I did have trouble sleeping and was prescribed amytripline for as long=
as I was taking the prednisone. I also had weight gain. I am not physica=
lly active, but some of the weight came off when decreasing the dose. But =
my main goal was to lessen the pain.

Sent from Mail for Windows 10

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Prednisone is a miracle drug.....but also gives some unwelcome gifts for sure!

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@munchie

the more i read about pmr and the more i have my own experiences i have come to the conclusion this is a tricky disease..i was doing well on taper from 20 to 7.5 when i relapsed and had to return 20 which was inadequate..now on 25mg for4 days with relief of pain and increased mobility of hip joints..however i too suffer greatly from severe fatigue which my rheumatologist says is not characteristic of pmr --i totally disagree but dont won't to come off as an arrogant dr/patient

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I don't think it should be considered arrogant when you know what your body is feeling! It's actually very helpful when you share your suspicions because you may find that many of us are in agreement with you.

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@artist01

@munchie and bunkysmum78. I don't have PMR but have Giant Cell Arteritis. I was on Prednisone for 1 1/2 years and suffered severe fatigue. No more fatigue after stopping Prednisone! Maybe your Prednisone is a contributing factor, as mine was.

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For me, Prednisone complicates my insomnia, which could account for my fatigue feeling during the day (specifically in the afternoons).

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since going this support group 24 hrs ago i am so invigorated to find so many with so much in common..i find your shared thoughts so very helpful..my son who is a transplant cardiologist agrees that laymen often know more than the doctors and listening is often the key to finding solutions..again i thank you all

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insomnia is without doubt a frequent side effect of prednisone

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@munchie

i am a retired gastroenterologist age 74. 6months ago i awakened with severe R hip pain and decreased mobility in both hip joints..spoke to my internist and because of the politics of medicine today i was referred to a sports medicine specialist..routine x rays were done and he claimed i had osteoarthritis[which i do, albeit very minimal] and suggested steroid injection under ultrasound guidance despite me claiming that osteo does not come on so suddenly..after 2 weeks and no response he sent me to an orthopedist who repeated plain films of hips and said i need a hip replacement but because of the steroid injection it would be put on hold for 2-3 months..with me having increasing and sever pain he ordered sed rate and crp which were quite elevated..his focus now was that i had an abscess in the hip and sent me back to sports medicine for aspiration of joint--which btw was neg..so i did what i swore i would not do and that is treat myself, got an mri and took a dose pack with overnight relief..mri confirmed i did not need a hip replacement and i then put myself in the hands of a rheumatologist who in less than a minute confirmed the dx of pmr ..have had ups and downs in that every time i get below 20 mg of prednisone the symptoms increase..and when the joint mobility and pain decreases i am left with sever fatigue and subjective muscle weakness..trying to be a patient patient...all thoughts would be appreciated

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Thanks to all who responded! I do have a rheumatologist just not for sure he is right one. I couldn't get in to see another recommended until April 12th. I am going for another blood test Monday to check if inflammation is still going up. Thanks for you words of encouragement!! Sue

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@kimh

I have also been having a tough time with PMR this season and am also on Methotrexate (besides Prednisone). Maybe @123suew needs a secondary medication?

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Did you have any bad side effects from the Methotrexate? Are you taking that plus prednisone? Thanks 123SueW

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@munchie

since going this support group 24 hrs ago i am so invigorated to find so many with so much in common..i find your shared thoughts so very helpful..my son who is a transplant cardiologist agrees that laymen often know more than the doctors and listening is often the key to finding solutions..again i thank you all

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This support group has helped me through many of a rough time!

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@123suew

Did you have any bad side effects from the Methotrexate? Are you taking that plus prednisone? Thanks 123SueW

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Umm....yes and yes! But the good news is, is that I am able to brush the back of my hair now! The methotrexate side effects are improving as perhaps, my body is getting used to the medication. The folic acid helps, but you can not take methotrexate and folic acid together. So I found that I was laid up (tired, dizziness, nausea, hair loss) until the folic acid kicked in. Often, I would have to take onedestron to help with the nausea.

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