1. < Polymyalgia Rheumatica (PMR)

Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Posted by Ethan McConkey, Moderator @ethanmcconkey, Dec 18, 2019

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.

Mentor
John, Volunteer Mentor | @johnbishop | Feb 6, 2021
In reply to @123suew "I just had a relapse. I have been on 20mg. For 3 weeks And I have..." + (show)
@123suew

I just had a relapse. I have been on 20mg. For 3 weeks
And I have not improved any. I am so fatigued I can hardly walk across house. Does any one take more than 20mg? I had gotten down to 10 then had this relapse. Does the prednisone ever just stop working?

Jump to this post

@123suew, Sorry to hear that you haven't seen much improvement on the 20 mg prednisone dosage. Sometimes if you try to taper too fast the PMR can flare back up. Have you discussed it with your rheumatologist?

REPLY
kimh | @kimh | Feb 6, 2021

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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1 reply
kimh | @kimh | Feb 6, 2021
In reply to @123suew "I just had a relapse. I have been on 20mg. For 3 weeks And I have..." + (show)
@123suew

I just had a relapse. I have been on 20mg. For 3 weeks
And I have not improved any. I am so fatigued I can hardly walk across house. Does any one take more than 20mg? I had gotten down to 10 then had this relapse. Does the prednisone ever just stop working?

Jump to this post

Such a good question @123suew . I have been as high as 40 mg (I also suffer from Mesenteric Panniculitis, and Prednisone is also the 'go to' medication), and have been tapered down to 15 mg. I can't seem to budge from there without consequences of one disease or the other! I have been on Prednisone steadily since Aug. 2017. I also wondered if our bodies can become 'used to' prednisone?

REPLY
kimh | @kimh | Feb 6, 2021
In reply to @bunkysmum78 "I started at 20, it only worked when I took 10 mg in the morning and..." + (show)
@bunkysmum78

I started at 20, it only worked when I took 10 mg in the morning and 10mg a=
t night. Reduced by 2.5 mg every 3 months, when I got down to 10 mg, had a=
relapse and went back up to 20mg. I understand your pain and frustration,=
but it is the only drug that works by reducing the inflammation, thereby r=
educing the pain. Was told to only reduce by 1 mg, so it took several year=
s before I got down to 1 mg, stayed at that for a very long time.

Sent from Mail for Windows 10

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Hi @bunkysmum78 . Did you have problems sleeping at night, taking the Prednisone so late in the day?

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1 reply
sharenb | @sharenb | Feb 6, 2021
In reply to @munchie "i am a retired gastroenterologist age 74. 6months ago i awakened with severe R hip pain..." + (show)
@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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I am the surrogate patient on this website for my 76 year old husband. He was diagnosed in early September 2020. His treatment started with 10 mg Prednisone, plus Sulfasalazine, Meloxicam. He is also a type 2 days diabetic. The Prednisone caused his glucose level to rise so he had to add insulin. The Melixicam and Sulfasazine were discontinued due to rapid weight loss (172 lbs. to 148 in 9 weeks). Methotrexate and folic acid were added. The pain, swelling and stiffness resumed when he decreased the Prednisone. Last week he had the first of three bi-weekly injections of Cymzia with one injection scheduled after the third. He still has some pain and stiffness, but overall is greatly improved. He also uses Lumigan for glaucoma, prescription antibiotic eye cream, Restasis, B12 and Vitamin D has just been added. He had his first Phizer Covid 19 vaccine last week. I guess the synopsis of this wordy message is lots of meds, effort, patience, and the right doctor.

REPLY
bunkysmum78 | @bunkysmum78 | Feb 6, 2021
In reply to @kimh "Hi @bunkysmum78 . Did you have problems sleeping at night, taking the Prednisone so late in..." + (show)
@kimh

Hi @bunkysmum78 . Did you have problems sleeping at night, taking the Prednisone so late in the day?

Jump to this post

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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1 reply
munchie | @munchie | Feb 6, 2021
In reply to @123suew "I just had a relapse. I have been on 20mg. For 3 weeks And I have..." + (show)
@123suew

I just had a relapse. I have been on 20mg. For 3 weeks
And I have not improved any. I am so fatigued I can hardly walk across house. Does any one take more than 20mg? I had gotten down to 10 then had this relapse. Does the prednisone ever just stop working?

Jump to this post

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

REPLY
4 replies
bunkysmum78 | @bunkysmum78 | Feb 6, 2021
In reply to @munchie "the more i read about pmr and the more i have my own experiences i have..." + (show)
@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

Jump to this post

I also had severe fatigue, BP and thyroid meds also contributed, but I agre=
e that fatigue is a side effect.

Sent from Mail for Windows 10

REPLY
1 reply
artist01 | @artist01 | Feb 6, 2021
In reply to @bunkysmum78 "I also had severe fatigue, BP and thyroid meds also contributed, but I agre= e that..." + (show)
@bunkysmum78

I also had severe fatigue, BP and thyroid meds also contributed, but I agre=
e that fatigue is a side effect.

Sent from Mail for Windows 10

Jump to this post

@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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1 reply
ncgal | @ncgal | Feb 6, 2021
In reply to @munchie "the more i read about pmr and the more i have my own experiences i have..." + (show)
@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

Jump to this post

Yes, I also find fatigue to be part of either the PMR itself or the prednisone. I don't think the doctors really know too much about this disease and a lot of it is guess work. For instance, when I mentioned the fatigue to my oncologist, who is aware of my PMR, suggested I take myself off of the Anestrozole for a couple of weeks to see if that helped. Of course, it didn't. It is a little comforting to know that I am not the only one with the fatigue.

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