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 | Jan 5, 2021
In reply to @moni54 "I contacted him about the dosage and he didn't suggest splitting it. I do tolerate the..." + (show)
@moni54

I contacted him about the dosage and he didn't suggest splitting it. I do tolerate the morning pain pretty well, esp. since I know it will ease up by 1 pm! The rheumatologist did say that I should expect to have PMR for 1.5 years - this is probably an average, right? I have read that the tapering should be about one mg. per month, but your experience was faster on the 1 or 2 week schedule, right?
I also want to say I am so glad I found this forum. PMR is such a strange and unknown disease -- so much so that it can go undiagnosed in some of us for months. Thank you for all you do here.

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@moni54, Each of us is different when it comes to tapering and how PMR affects us. I discussed tapering and got some tips from my Mayo rheumatologist. When I could go down every 1 or 2 weeks without pain I did, but there were times when I had to go down a month at a time earlier in my bout with PMR. The last 6 months before I tapered off completely was the hardest and I was going back and forth from 1 mg to 1/2 mg every week until I was able to stop taking prednisone. My 1st occurrence with PMR lasted 3-1/2 years, second time was 1-1/2 years.

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moni54 | @moni54 | Jan 5, 2021
In reply to @kimh "My rheumatologist told me that I would be on a combination of Prednisone and Methotrexate for..." + (show)
@kimh

My rheumatologist told me that I would be on a combination of Prednisone and Methotrexate for 2-3 years for the PMR.

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Thank you for the info - interesting that you are on a combination treatment. How long are you into the PMR journey at this point? In my case I wonder if my 1.5 year clock started running when I started prednisone or when symptoms began. I will have to ask the rheumatologist when I see him in March.

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kimh | @kimh | Jan 5, 2021

I was diagnosed in 2015, but started on Prednisone in Aug. 2017. I started on Methotrexate around 4 months ago, so I am thinking I probably have at least another year of these medications. Unfortunately....

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Erika | @erikas | Jan 7, 2021
In reply to @annvblewis "Glad to find this group! I was lucky to have been diagnosed early by my PCP..." + (show)
@annvblewis

Glad to find this group! I was lucky to have been diagnosed early by my PCP in October 2020 and started at 60mg prednisone and began taper after 2 weeks. I also had bilateral biopsy to rule out GCA. Rheumatologist changed me to methylpredisalone, but I don't understand the reason or difference between the two steroids. I'm also on split doses- morning and evening with food. I'd like to better understand these steps. I've been at 20mg Methylpredisalone for 3 weeks. It reduces, but doesn't eliminate the pain and stiffness. Any comments or suggestions?

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@annvblewis Welcome to Mayo Clinic Connect, a place to give and get support. You don't understand the reason and the difference between the two steroids your provider gave you. You are looking for answers from members that have gone through something similar

It looks like @pfafpa @moni54 responded to your question and gave the advice of asking your provider. May I ask what your provider's explanation was for the medications?

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munchie | @munchie | Feb 5, 2021

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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6 replies
artist01 | @artist01 | Feb 5, 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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Hi @munchie. It's ironic that you, as a retired GI, would get such a medical runaround. I'm so sorry you've had such a bad experience. It sounds like what a lot of us experience as ordinary folks! I hope you have success with your rheumatologist. I have GCA, and have learned that my rheumatologist is top of the line. Its good that you were your own best advocate and finally got some answers. Good luck with your journey.

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Mentor
John, Volunteer Mentor | @johnbishop | Feb 5, 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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Hello @munchie, I would like to add my welcome to Connect along with @artist01 and others. Don't you just hate it when doctors don't listen to what you are telling them about your symptoms. So happy you found a rheumatologist to confirm the diagnosis and get your treatment started. My PMR is currently in remission but the 2 occurrences when it was active I was started at a dosage of 20 mg prednisone. My rheumatologist was up front with me with the goal of tapering off of prednisone as soon as was possible. Took me 3 and half years to taper off the first occurrence and 1 and half years the second time around. My rheumatologist gave me some suggestions on a tapering schedule and then told me to listen to my body and not taper too fast. I kept a daily pain level and dosage log as I was tapering weekly at first but several times change to 2 weeks or 3 weeks on a certain dosage if the pain was too much. I also found that regular exercise really helped when tapering off of prednisone but not if I overdid it.

Here is an article from 2015 that discusses latest advances in PMR – Latest Advances in the Diagnosis and Treatment of Polymyalgia Rheumatica: https://www.practicalpainmanagement.com/pain/myofascial/inflammatory-arthritis/latest-advances-diagnosis-treatment-polymyalgia-rheumatica

Here are a few other PMR discussions you might find helpful:
- Successfully treated for Polymyalgia Rheumatica: https://connect.mayoclinic.org/discussion/polymyalgia-rheumatica-my-story/
- PMR Anyone?: https://connect.mayoclinic.org/discussion/pmr-anyone/

Have you thought about or made any changes in diet or lifestyle to try and help your PMR symptoms?

REPLY
karinaph | @karinaph | Feb 5, 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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hello munchie. your experience is so similar to many of us, lack of proper diagnosis, and general confusion about the whole thing. Going through this during a pandemic adds a layer of confusion too. John has given you great insights, so I won't repeat what he has so carefully crafted.
I'm in my 1st year of diagnosis ( had symptoms for 3plus months before that), and only down to 9.5 mg. I'm going very slowly, as I had a relapse when I tried going down too fast and started getting Giant Cell Arteritis (GCA) symptoms, yikes no good. I too want to get off the prednisone, as the side effects are not great, but it doesn't seem to be an option as of yet. 1.5-3 years is the course according to my MD.
I can attest to exercise being very important. Take it easy, walking is a great low impact choice. if you can go 20 minutes each day, you'll be doing an hour within a few months. You may benefit from epsom salt baths, magnesium rubs. But you're an MD and know these non invasive techniques.
this discussion group has been good for me, just knowing others are in the same boat, and listening to tips etc.
take care, karinaph

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123suew | @123suew | Feb 5, 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 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?

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4 replies
bunkysmum78 | @bunkysmum78 | Feb 5, 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

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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