1. < Polymyalgia Rheumatica (PMR)

Diagnosed with PMR 2 1/2 years ago. How do I manage the extreme pain?

Posted by sallyann @sallyann, May 10, 2016

I was diagnosed with PMR 2 1/2 years ago. Steroids didn't help now I'm on Methotrexate for a month. My EMG today was negative. I take Tramodsl, Motrin, and Tylenol to deal w the extreme pain. What do I do next? I'm 54 now.

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

Mentor
John, Volunteer Mentor | @johnbishop | Jun 30, 2020
In reply to @sidsell2 "yes , I have a year and half ago , primarily for arm pain and hip..." + (show)
@sidsell2

yes , I have a year and half ago , primarily for arm pain and hip pain in the AM , went on prednisone and it helped. I have been okay and have actually had a TKR. went well , However at this time I have severe pain in my neck , near the ear area , and tolerable pain in one upper arm , and severe pain in shoulder area , which is a burning stabbing pain , don't now if its PMR again ... HELP

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Hello @sidsell2, Welcome to Connect. Another condition associated with PMR is Giant Cell Arteritis (GCA). It presents abruptly as stiffness and pain in the neck, shoulders, and hips. There is another discussion on GCA that you might find helpful.

Giant cell arteritis: https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

Have you discussed the new symptoms with your doctor or rheumatologist?

REPLY
leesasage | @leesasage | Sep 30, 2021
In reply to @johnbishop "Hello @ltta, welcome to Connect. I'm sorry to hear your PMR is back. My second occurrence..." + (show)
@johnbishop

Hello @ltta, welcome to Connect. I'm sorry to hear your PMR is back. My second occurrence finally went into remission last February when I was able to taper off of prednisone. Have you done any work on your diet or nutrition to help reduce the inflammation associated with PMR? After my first bout with PMR I developed small fiber peripheral neuropathy and started looking at cellular nutrition as something to help improve my overall health. I started working on it after reading a book by Dr. Terry Wahls - The Wahls Protocol. She has an interesting story to tell on how she used nutritional changes to eliminate the symptoms of her MS. More about her here: https://terrywahls.com/about/about-terry-wahls/

There certainly is a lot of debate about to get a flu shot or not. This year I am participating in a flu shot clinical study for elderly folks so I'm hoping they get some useful information from the study. I can understand not getting one if you've had a bad experience but I'm pretty sure my PMR was not caused by a flu shot. Here is an article that might help give you more background information about the benefits and risks of getting the flu shot if you immune system is compromised and to help you ask the right questions of your doctors to get clear answers.

If Your Immune System Is Compromised, Can You Get Vaccinated?
-- https://health.clevelandclinic.org/if-your-immune-system-is-compromised-can-you-get-vaccinated/

@ltta thanks for the shout out. We all need to do that now and then! I'm hoping your PMR goes into hiding quickly.

John

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So vaccines cause pmr?

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 30, 2021
In reply to @leesasage "So vaccines cause pmr?" + (show)
@leesasage

So vaccines cause pmr?

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Polymyalgia rheumatica (PMR) is a rheumatic autoimmune inflammatory disease. There are case reports of subjects who developed PMR following influenza vaccination. Vaccine components can activate the immune system and induce inflammatory or immune responses.

PMR is uncommon adverse event following immunization. But several people in this group has report a PMR flair after vaccination.

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2 replies
leesasage | @leesasage | Sep 30, 2021
In reply to @colleenyoung "Polymyalgia rheumatica (PMR) is a rheumatic autoimmune inflammatory disease. There are case reports of subjects who..." + (show)
@colleenyoung

Polymyalgia rheumatica (PMR) is a rheumatic autoimmune inflammatory disease. There are case reports of subjects who developed PMR following influenza vaccination. Vaccine components can activate the immune system and induce inflammatory or immune responses.

PMR is uncommon adverse event following immunization. But several people in this group has report a PMR flair after vaccination.

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That’s interesting. I had severe flu shot reaction years back almost killed me. They are very bad for those thst are allergic to them. Scary we’re so mandated these days when there are genuine allergies

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susi451 | @susi451 | Oct 1, 2021
In reply to @charlena "My husband has been diagnosed as having polymylagia rheumatica (from symptoms alone, no muscle biopsy has..." + (show)
@charlena

My husband has been diagnosed as having polymylagia rheumatica (from symptoms alone, no muscle biopsy has been done to date). He has been prescribed 5 mg. prednisone bid. His doc has wanted him to try and gradually reduce the dosage which he has tried to do but after just one missed dose the pain returns.
He has now been on the prednisone over one year. More recently, he was prescribed Chloroquine, which he took approximately one week and had to discontinue due to side effects. I would like to hear from others on how they were diagnosed with PMR and if anyone else has been on prednisone this long and what other medications have been prescribed. Thank you.

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that seems like a very low dose of prednisone for the initial start-up of treatment. I think most people start on 15-20 mg to get complete pain relief and start tritrating down with your doctor's guidance.

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pacarolyn | @pacarolyn | Oct 11, 2021

So sorry you are in pain but I found not giving in to my pain and keeping moving helped. I also took aquatic therapy which made moving in water easier and helps keep my muscles flexible and strong. Reducing inflammation with an anti-inflammatory diet also helped tremendously so that I am now seeing a significant reduction in my pain without medication. Everyone is different but I hope this will help you as well.

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munchie | @munchie | Oct 12, 2021

when i read about people's pain from pmr [and i could be wrong] my first and only thought is that there is a flare and one needs to increase prednisone dose..easy to confirm with crp and sed rate

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kathleenkapes | @kathleenkapes | Nov 26, 2021
In reply to @colleenyoung "Polymyalgia rheumatica (PMR) is a rheumatic autoimmune inflammatory disease. There are case reports of subjects who..." + (show)
@colleenyoung

Polymyalgia rheumatica (PMR) is a rheumatic autoimmune inflammatory disease. There are case reports of subjects who developed PMR following influenza vaccination. Vaccine components can activate the immune system and induce inflammatory or immune responses.

PMR is uncommon adverse event following immunization. But several people in this group has report a PMR flair after vaccination.

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Mine began 10 days after the J and J jab for COVID.

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2 replies
kathleenkapes | @kathleenkapes | Nov 26, 2021

I also take Tramadol, Cumbalta, and Tizanadine….plus Tylenol.

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1 reply
kathleenkapes | @kathleenkapes | Nov 26, 2021
In reply to @kathleenkapes "I also take Tramadol, Cumbalta, and Tizanadine….plus Tylenol." + (show)
@kathleenkapes

I also take Tramadol, Cumbalta, and Tizanadine….plus Tylenol.

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Cymbalta!

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