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.

issyb | @issyb | Feb 19, 2023

Hi everyone.. need some advice.
Diagnosed with PMR on Feb 1 and have been on 10mg
prednisone since Feb 9 doing very well .
The past two days I have had headaches on the back of my skull & on the top of my skull. Not severe.. sort of burning sensation. I’m worried about temple arteritis/ giant cell arteritis.
I have no pain on my temples, no scalp tenderness and no jaw pain, but I am concerned about head pain, burning radiating from the back of my head to the top of it. … comes and goes.
Rheumatologist appointment on March 3…
Was considering going to the emergency room, but I’m not sure what to do.
Suggestions or advice from anyone would be GREATLY appreciated
Thanks so much

REPLY
1 reply
christi48 | @christi48 | Feb 19, 2023
In reply to @tsc "Hi @redboat, I told my rheumatologist there is nothing like the pain of PMR. I called..." + (show)
@tsc

Hi @redboat, I told my rheumatologist there is nothing like the pain of PMR. I called it my astronaut suit of pain and stiffness. And the pain was always worse in the mornings! Not even 45 minutes of stretching in bed or a long walk in the mornings helped it. It eased up a little, but it was still pretty bad in the evenings. I spent a year on the couch with the companionship of an infrared heating pad. The only treatment I got for GCA was 40 mg of prednisone, which I tapered down by 5mg every two weeks, starting in late May of 2021. I was on it about a year and a half. I gained the weight I lost back, and the shingles was a mild case. There is also a medication you can take for shingles if caught early enough. I had a CRP test every month, and only had to go back up to a previous dosage of prednisone once.

Did you talk to your doctor about your pain? Maybe your meds need tweaking. The guidance I've read is to take tylenol (not NSAIDs) for pain management.

I wish you the best and hope your symptoms ease up soon.

Jump to this post

I remember, when first diagnosed and not willing to take Pred., one night when the pain was so severe it felt like my entire body was on fire. That is when I gave in and started Pred. Can you imagine having this disease before Pred? I don't know how anyone could survive it. I'm not a pill-taker but this situation forced me to change my mind.

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1 reply
issyb | @issyb | Feb 19, 2023

Hi everyone
I just posted this message and can’t find it so sending it again. Forgive me if it is a duplicate. ( I’m new here)
I was diagnosed with PMR on February 1 started a med pack for 6 days( until PMR confirmed ) and since Feb 9 I’ve been on 10 mg of prednisone.
I’m doing very very well with almost all symptoms gone .
HOWEVER, I have had headache for last three nights.. back of head and top as well, only on the right side ( no temple pain) , no jaw pain, and no vision issues. No scalp tenderness. Sort of burning sensation and aches…. Not severe and comes and goes.
I have my first rheumatologist appointment March 3.
I was considering going to the emergency room for these head aches, but I don’t know what to do.
Any suggestions?
Thank you so much for any help

REPLY
2 replies
tillysam | @tillysam | Feb 20, 2023
In reply to @issyb "Hi everyone I just posted this message and can’t find it so sending it again. Forgive..." + (show)
@issyb

Hi everyone
I just posted this message and can’t find it so sending it again. Forgive me if it is a duplicate. ( I’m new here)
I was diagnosed with PMR on February 1 started a med pack for 6 days( until PMR confirmed ) and since Feb 9 I’ve been on 10 mg of prednisone.
I’m doing very very well with almost all symptoms gone .
HOWEVER, I have had headache for last three nights.. back of head and top as well, only on the right side ( no temple pain) , no jaw pain, and no vision issues. No scalp tenderness. Sort of burning sensation and aches…. Not severe and comes and goes.
I have my first rheumatologist appointment March 3.
I was considering going to the emergency room for these head aches, but I don’t know what to do.
Any suggestions?
Thank you so much for any help

Jump to this post

I would definitely get to the rheumatologist. When I went with a headache to the ER they had no idea what to do with me. At that time my blood work was ok. You could go to your primary for blood work ( especially CRP and Sedimentation levels). A couple of weeks later, my blood levels were not good. It took 4 months to diagnose GCA. If anything else changes dramatically, definitely get to the ER. My best to you.

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1 reply
khmc | @khmc | Feb 20, 2023

Physical therapy is a great way to find gentle stretches. Yin Yoga, Aqua aerobics also help with gentle stretches, especially for shoulders. Muscles are meant to move so walking or biking lessen the stiffness.
It's important to find ways to take care of ourselves besides meds.

REPLY
khmc | @khmc | Feb 20, 2023
In reply to @issyb "Hi everyone.. need some advice. Diagnosed with PMR on Feb 1 and have been on 10mg..." + (show)
@issyb

Hi everyone.. need some advice.
Diagnosed with PMR on Feb 1 and have been on 10mg
prednisone since Feb 9 doing very well .
The past two days I have had headaches on the back of my skull & on the top of my skull. Not severe.. sort of burning sensation. I’m worried about temple arteritis/ giant cell arteritis.
I have no pain on my temples, no scalp tenderness and no jaw pain, but I am concerned about head pain, burning radiating from the back of my head to the top of it. … comes and goes.
Rheumatologist appointment on March 3…
Was considering going to the emergency room, but I’m not sure what to do.
Suggestions or advice from anyone would be GREATLY appreciated
Thanks so much

Jump to this post

Please call your Rheumatologist asap and request a blood test for GCA. This is how it begins and it's very important to get the results for your SED rate as soon as you suspect GCA. They should increase prednisone immediately. This is how mine began.

REPLY
1 reply
issyb | @issyb | Feb 20, 2023
In reply to @khmc "Please call your Rheumatologist asap and request a blood test for GCA. This is how it..." + (show)
@khmc

Please call your Rheumatologist asap and request a blood test for GCA. This is how it begins and it's very important to get the results for your SED rate as soon as you suspect GCA. They should increase prednisone immediately. This is how mine began.

Jump to this post

Thank you
I decided to go to hospital. They admitted me and they increased prednisone to 40mg
I have a temporal biopsy scheduled for this morning 🙏
They told me to stay on 40 until biopsy results
I’m glad I decided to go

REPLY
khmc | @khmc | Feb 20, 2023

You definitely made the right decision. The only way to get the correct treatment is via the biopsy. Once the inflammation under is control then you can researh options for continuous medicine. I chose Actemra.

REPLY
2 replies
suetex | @suetex | Feb 20, 2023
In reply to @cookiegirl1944 "I am experiencing what you are going through. I was diagnosed with PMR nine months ago..." + (show)
@cookiegirl1944

I am experiencing what you are going through. I was diagnosed with PMR nine months ago and was started out on 30 mg of Prednisone. At that dose I felt no pain , no depression and had so much energy I could work 15 hours a day non stop. Once I got down to 20 mg a day then the pain, depression, fatigue came back. The doctor did not know what to think and declined to give me methotrexate to help me. He just kept reducing the dose of prednisone until I got to seven mg a day. Pain and stiffness in my lower back, hips and bath legs. Can hardly move. Last week I was seen my a rheumatologist at the Mayo Clinic in Rochester who said he did not believe I had PMR. He wants me now over the course of 12 weeks to get off the prednisone. He thinks I may have fibromyalgia and wanted me to take Cymbalta which I declined. I have no generalized pain, only in my hips and legs. He will give me in a few days a cortisone injection in one hip plus I will have a nerve conduction test. Now I am confused as to what is causing the leg pain and stiffness so any ideas from others would be greatly appreciated.

Jump to this post

I too have the majority of pain in my thighs and legs in general, not in upper body. Very stiff. Have been reducing (very slowly) my pred and am down to 4 mg of prenissalone. Don't want to go up on pred as I have glaucoma and experiencing vision loss as it is. I will be seeing rheumy in a couple of weeks and don't think he will much to add. Already had EMG which was negative and can't imagine what else it could be. Have trouble walking so need some kind of fix. About shots of cortisone- remember, you might get a systemic effect which will make you feel better for awhile. Cymbalta made me experience anhedonia, didn't care about anything, no good. Did help slightly with pain, 'though. Might be different for you.

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1 reply
issyb | @issyb | Feb 20, 2023
In reply to @khmc "You definitely made the right decision. The only way to get the correct treatment is via..." + (show)
@khmc

You definitely made the right decision. The only way to get the correct treatment is via the biopsy. Once the inflammation under is control then you can researh options for continuous medicine. I chose Actemra.

Jump to this post

Yes thank you
I was so glad to receive your message last night while I was here to actually confirm my decision .
Still waiting for biopsy
Will keep you posted
So grateful to you for your response..THANK YOU

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