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.

mcgeesdad | @mcgeesdad | Jun 4, 2021
In reply to @roboedit "Does the diagnosis of PMR lead to decreased lifespan?" + (show)
@roboedit

Does the diagnosis of PMR lead to decreased lifespan?

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I do not believe that it does as it is classified as an autoimmune condition.

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mimik211 | @mimik211 | Jun 4, 2021
In reply to @karinaph "Thank you. My husband who is a medical researcher has been looking for data on this..." + (show)
@karinaph

Thank you. My husband who is a medical researcher has been looking for data on this subject and thus far his findings are that immunocompromised folks ( like me) should act as though we could be exposed and vulnerable when in public where we don’t know who has been vaccinated. Ugh! I’ve been hiking without a mask but when I go into stores I’m putting it back on.

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I agree—I’m wearing a mask whether required or not—whenever I go into a store—I still feel vulnerable even after vac...Hope you’re doing well!

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karinaph | @karinaph | Jun 4, 2021
In reply to @mcgeesdad "My doctor prescribed Colchicine and knocked out all PMR." + (show)
@mcgeesdad

My doctor prescribed Colchicine and knocked out all PMR.

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Well that’s a new one. Can you tell us more about your experience? Inquiring minds do want to know more!

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2 replies
Jeff Down Under | @legendts | Jun 4, 2021
In reply to @karinaph "Thank you. My husband who is a medical researcher has been looking for data on this..." + (show)
@karinaph

Thank you. My husband who is a medical researcher has been looking for data on this subject and thus far his findings are that immunocompromised folks ( like me) should act as though we could be exposed and vulnerable when in public where we don’t know who has been vaccinated. Ugh! I’ve been hiking without a mask but when I go into stores I’m putting it back on.

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My wife (has Leukaemia) has been advised by her specialist at the PeterMac (Melbourne Australia) that we should both continue all of our pandemic precautions no matter where we are for the foreseeable future. Have also read to only associate, where possible, with vaccinated people.

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1 reply
Jeff Down Under | @legendts | Jun 4, 2021
In reply to @mcgeesdad "My initial occurrence of PMR was Sept. 2019 and it lingered in various intensities through mid-July..." + (show)
@mcgeesdad

My initial occurrence of PMR was Sept. 2019 and it lingered in various intensities through mid-July 2020. It remained undiagnosed that entire time. In mid-July on my 70th BD I was sent to ER (Happy Birthday) and was diagnosed with Pericarditis. Stayed at Mayo for 3 days. But on day one the Doctors prescribed for me Colchicine & 40 mg Prednisone. Well that immediately addressed the pain from the Pericarditis as well as completely & simultaneously eliminated all body and muscle stiffness from PMR!

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I would suggest that the 40mg of prednisone is the reason for the pain suppression. I could barely shuffle and within 5 hours of taking 50mg of prednisone I was virtually pain free. Reduced to 25mg for three days then continued tapering and currently at 8mg. I continue to be pain free other than mild discomfort in my R knee first thing of a morning.

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Jeff Down Under | @legendts | Jun 4, 2021
In reply to @gcap "I developed PMR in Sept of 2018 3 months after getting shingles and was put on..." + (show)
@gcap

I developed PMR in Sept of 2018 3 months after getting shingles and was put on methylprednisolone 8mg, soon tapered to 4 mg with ibuprofen (2 tablets at night). Within 9 months had weaned off methlyprednisolone and was just on ibuprofen to manage pain. In Sept. of 2020 I got a shingles shot (Shingrix) which has thrown my PMR through the ceiling. I went back on the methylprednisolone and within 8 months had to stop it due to side effects (leg and foot cramping, SOB, blurry vision, itchy skin, and anxiety) I now take 2 tablets of ibuprofen every night. I am now getting pain and numbness in arms at night which is prohibiting me for being able to sleep. I have put on weight because I am now tired all the time (food gives energy but being overweight makes me lose energy - vicious circle) Any ideas....I will not get the COVID vaccine as it is similar to Shingrix (or so my allergy Doctor and pharmacist say) and I will not go through another pain cycle before this on is over. Any ideas as to naturally try to control this pain in my arms and now itching skin? Thank you for your time.

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Do hope you can get on top of your pain issues soon. Does your itchy skin have tiny blisters as I have had this recurring issue quite often and now use Elocon Alcohol Free cream 0.1% which has been the only thing to control it. I only use it sparingly as it is a corticosteroid.

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1 reply
mcgeesdad | @mcgeesdad | Jun 4, 2021
In reply to @karinaph "Well that’s a new one. Can you tell us more about your experience? Inquiring minds do..." + (show)
@karinaph

Well that’s a new one. Can you tell us more about your experience? Inquiring minds do want to know more!

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From what I understand Colchicine is a medication used to treat gout. The anti-inflammation properties that make it effective against gout, also make it effective in treating Pericarditis. So, believe those same qualities helped with the PMR.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 4, 2021
In reply to @legendts "My wife (has Leukaemia) has been advised by her specialist at the PeterMac (Melbourne Australia) that..." + (show)
@legendts

My wife (has Leukaemia) has been advised by her specialist at the PeterMac (Melbourne Australia) that we should both continue all of our pandemic precautions no matter where we are for the foreseeable future. Have also read to only associate, where possible, with vaccinated people.

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FYI Jeff, did you know there is a group related to leukemia here on Mayo Clinic Connect? See
- Blood Cancers & Disorders https://connect.mayoclinic.org/group/blood-cancers-disorders/

You and/or your wife are welcome there any time. 🙂

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1 reply
Jeff Down Under | @legendts | Jun 4, 2021
In reply to @colleenyoung "FYI Jeff, did you know there is a group related to leukemia here on Mayo Clinic..." + (show)
@colleenyoung

FYI Jeff, did you know there is a group related to leukemia here on Mayo Clinic Connect? See
- Blood Cancers & Disorders https://connect.mayoclinic.org/group/blood-cancers-disorders/

You and/or your wife are welcome there any time. 🙂

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Thanks Colleen. Yes I did know but haven’t got that far yet 😉. We are on another CLL list but I will look in on the Mayo one.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 5, 2021
In reply to @karinaph "Well that’s a new one. Can you tell us more about your experience? Inquiring minds do..." + (show)
@karinaph

Well that’s a new one. Can you tell us more about your experience? Inquiring minds do want to know more!

Jump to this post

@mcgeesdad @karinaph, I had gout in my right foot at the same time when I was first diagnosed with PMR. I was given Colchicine for the gout and prednisone for the PMR. I think they both help with inflammation but the prednisone is better for pain and inflammation. The way my rheumatologist explained the Colchicine to me was that it helps break down the uric crystals that can cause the gout pain so that they can be expelled from the body.

Colchicine (Oral Route): https://www.mayoclinic.org/drugs-supplements/colchicine-oral-route/description/drg-20067653
Colchicine (Colcrys, Mitigare): https://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Colchicine-Colcrys-Mitigare

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