1. < Polymyalgia Rheumatica (PMR)

PMR: Pain moving around your body

Posted by theref @theref, Sep 4, 2022

Hi, I got diagnosed with PMR about a month ago and have been in constant pain since then. I’m working with my Doc trying to get the Prednisone dosage sorted but everyday is pretty rough, walking being pretty difficult until early/mid afternoon. I’ve noticed that the pain moves randomly between my knees, hips me shoulders with the pain each day being stronger in different parts of my body. And today completely out of the blue one of my elbows has become quite painful - random!!! The joys of PMR!! Wondering if this is common with others? Thanks

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

flymetothemoon | @flymetothemoon | Sep 13, 2022

Yea despite what some doctors say. It has effected my knees, feet and hands. Went to have X-rays and mris to orthopedists and nothing there no so believe everyone gets this differently. I was hoping after 3 years I would be done. Blood tests normal but having pain.

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anitacs | @anitacs | Sep 14, 2022
In reply to @elizabethjoan "Hi Therf. This certainly sounds familiar. I have only been diagnosed a couple of months and..." + (show)
@elizabethjoan

Hi Therf. This certainly sounds familiar. I have only been diagnosed a couple of months and since then have had pain in my lags (both at the same time), groin areas, right knee and things, left bicep, right wrist (currently), shoulders…. When I wake at 4 am I move various body parts to see where it is today. Quite an experience…..almost like a game. I play French horn in an orchestra (this is played with the left hand) so I am so thankful that it is my right wrist that is affected and dreading that the pain with move to the left. I must say this is the weirdest disease I have ever known.

Jump to this post

Yes it is a weird disease. I've only been diagnosed recently and this is my 5th day on pred. I had to split my dose because nothing was working for the morning stiffness. I truly could not walk. Today I woke up at 5am and wiggled my legs and they worked! Hallelujah.

I do have severe shoulder pain but I think it was how I was sleeping. Need to work on that.

So glad this support group exists. No one understands this but us.

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1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Sep 14, 2022
In reply to @anitacs "Yes it is a weird disease. I've only been diagnosed recently and this is my 5th..." + (show)
@anitacs

Yes it is a weird disease. I've only been diagnosed recently and this is my 5th day on pred. I had to split my dose because nothing was working for the morning stiffness. I truly could not walk. Today I woke up at 5am and wiggled my legs and they worked! Hallelujah.

I do have severe shoulder pain but I think it was how I was sleeping. Need to work on that.

So glad this support group exists. No one understands this but us.

Jump to this post

Hello @anitacs, Welcome to Connect. PMR can bad news when the pain is not controlled. It's good that splitting your dose helped. I've had 2 occurrences of PMR and started both at 20 mg prednisone which kept me pretty much pain free until the next morning's dose. As you start tapering off when you start to feel better, you might find the following discussions helpful.

-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Tapering off of Prednisone:
https://connect.mayoclinic.org/discussion/prednisone/
What dosage of prednisone did you start with?

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2 replies
anitacs | @anitacs | Sep 14, 2022
In reply to @johnbishop "Hello @anitacs, Welcome to Connect. PMR can bad news when the pain is not controlled. It's..." + (show)
@johnbishop

Hello @anitacs, Welcome to Connect. PMR can bad news when the pain is not controlled. It's good that splitting your dose helped. I've had 2 occurrences of PMR and started both at 20 mg prednisone which kept me pretty much pain free until the next morning's dose. As you start tapering off when you start to feel better, you might find the following discussions helpful.

-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Tapering off of Prednisone:
https://connect.mayoclinic.org/discussion/prednisone/
What dosage of prednisone did you start with?

Jump to this post

Hello John!
Thank you for such a wonderful forum. I am only 8 days of discovering this new world. Didn't know about PMR until then although I had the severe pain for two months.

I am with a Kaiser HMO and my PCP started me at their standard dosage which was 15mg. They want to taper off by 2.5 mg every month. I don't think I'm ready for that. They ordered 3 months of different doses so I was going to up to 20 if I couldn't get relief with splitting.

I have a call with my PCP on 9/26 and going to ask to a rheumatologist referral. He is a wonderful doctor but has his hands full with the 1000 other patients he has. I also want someone that can speak the language we all speak.

I've been reading many of the threads the past few days and haven't seen anyone yet that is on the Rayos time released pill. I feel like I may want to try that too. I will keep reading!

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janiceem | @janiceem | Sep 23, 2022

I have had a mild case of PMR since 3/21 (after my second COVID vaccination), but it wasn't diagnosed for 4 months because I had no inflammatory markers and I only experienced pain when in bed. My pain was initially in my thighs and upper arms and no pain meds helped. My pain is primarily confined to my deltoids now. I started with 10 mg. of Prednisone and currently take 1. mg/day. I have tried multiple times to taper to .5 mg, but my pain returns in waves throughout the night and seems to migrate from my deltoids to my neck or the front of my head. I can be pain-free at times. I'm thinking I'm on the downward slope, but it is taking SO long to taper off of 1 mg. I have been on it for months. BTW, I am a registered dietitian and eat a whole foods organic diet, high in anti-inflammatory foods. I also take omega-3's and turmeric daily. Perhaps that is why my case is so mild??

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1 reply
tillysam | @tillysam | Sep 24, 2022

Personally, I have found this to be the case.

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virginiaj | @virginiaj | Sep 24, 2022
In reply to @janiceem "I have had a mild case of PMR since 3/21 (after my second COVID vaccination), but..." + (show)
@janiceem

I have had a mild case of PMR since 3/21 (after my second COVID vaccination), but it wasn't diagnosed for 4 months because I had no inflammatory markers and I only experienced pain when in bed. My pain was initially in my thighs and upper arms and no pain meds helped. My pain is primarily confined to my deltoids now. I started with 10 mg. of Prednisone and currently take 1. mg/day. I have tried multiple times to taper to .5 mg, but my pain returns in waves throughout the night and seems to migrate from my deltoids to my neck or the front of my head. I can be pain-free at times. I'm thinking I'm on the downward slope, but it is taking SO long to taper off of 1 mg. I have been on it for months. BTW, I am a registered dietitian and eat a whole foods organic diet, high in anti-inflammatory foods. I also take omega-3's and turmeric daily. Perhaps that is why my case is so mild??

Jump to this post

Have you tried a very gradual taper? I am on 2 mg now. When I go to 1.5, I will first take it only once a week, then move to every 4 days, then every 3 days, etc. I expect it will take about 2-3 months to get to 1.5 mg, then will stay there awhile, then move to one mg in the same way. I have had PMR 3 times. The first time, I went slowly and was in remission for 12 years, the second time, I pushed to get off the pred quickly and my “remission “ only lasted 10 months. I keep track of my doses on a calendar. I also found that my first day on a lower dose is fine, but the second day, I feel the effects.

REPLY
mary4 | @mary4 | Sep 24, 2022
In reply to @johnbishop "Hello @anitacs, Welcome to Connect. PMR can bad news when the pain is not controlled. It's..." + (show)
@johnbishop

Hello @anitacs, Welcome to Connect. PMR can bad news when the pain is not controlled. It's good that splitting your dose helped. I've had 2 occurrences of PMR and started both at 20 mg prednisone which kept me pretty much pain free until the next morning's dose. As you start tapering off when you start to feel better, you might find the following discussions helpful.

-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/
-- Tapering off of Prednisone:
https://connect.mayoclinic.org/discussion/prednisone/
What dosage of prednisone did you start with?

Jump to this post

Thank you for the very helpful links. I am getting a much needed education. I wish I'd known about Connect 19 months ago. My PMR journey would have been different and better.

REPLY
suetex | @suetex | Sep 24, 2022

I have found that Low Dose Naltrexone (I take 2 mg) is the only thing that helps my pain at night when I am not moving. Otherwise, I get painful, restless legs and can't sleep. I have had to go off of it for surgeries and I can't wait to get back on it. Talk to your rheumy about trying it and read about it. Don't confuse it with the dosing they use for overdoses or narcotic abuse situations. Same drug but at low doses very different.

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loyal | @loyal | Sep 24, 2022

What dosage for omega 3 and Turmeric? Any special brands?

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