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.

kmeikle1 | @kmeikle1 | Sep 4, 2021
In reply to @zaa "Reading some past posts this early a.m. and your July post made me smile because of..." + (show)
@zaa

Reading some past posts this early a.m. and your July post made me smile because of the no sleeping and getting housework done. I get in 4 hours if lucky and get up and cook usually. Trying to eat all organic and non-inflammatory foods per Amy Myers book. I was diagnosed with PMR last July and on prednisone since and tapering down but now scared of my bone health. Does your medications affect your bone density? I also had the worse sinus issues all last winter but the prednisone seemed to clear that up. Hope you’re doing well on tapering down.

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Prednisone can affect bone density. You may want to ask your doctor about getting a Dexascan so you'll have a baseline. I take Alendronic acid which has been effective at improving my bone density. I was diagnosed with PMR in 2019 and am currently tapering at 10 mg. prednisone.

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ajmencke | @ajmencke | Sep 4, 2021
In reply to @kmeikle1 "Prednisone can affect bone density. You may want to ask your doctor about getting a Dexascan..." + (show)
@kmeikle1

Prednisone can affect bone density. You may want to ask your doctor about getting a Dexascan so you'll have a baseline. I take Alendronic acid which has been effective at improving my bone density. I was diagnosed with PMR in 2019 and am currently tapering at 10 mg. prednisone.

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Had my bone scan and I have bone thinning. Nothing new - I took Boniva years ago for it. So, back to Boniva. Prolia makes me nervous - it says long term muscle and joint pain can result - well, I already have that problem.

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ajmencke | @ajmencke | Sep 4, 2021
In reply to @kmeikle1 "Getting old is fun :)" + (show)
@kmeikle1

Getting old is fun 🙂

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Maybe it beats the alternative!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2021
In reply to @mpstetson1 "Does anyone recommend Regeneron for PMR?" + (show)
@mpstetson1

Does anyone recommend Regeneron for PMR?

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@mpstetson1, Regeneron is a pharmaceutical company. Which drug are you referring to?

Also, I hope you will upload your picture with you and your dog to your profile.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 4, 2021
In reply to @pam52 "Hello Ethan, I just joined Mayo clinic connect, so I guess I am a member of..." + (show)
@pam52

Hello Ethan, I just joined Mayo clinic connect, so I guess I am a member of this group now? As a background, I was diagnosed four years ago with Giant Cell Arteritis. It is an autoimmune disease and a cousin to PMR. With high doses of Prednisone for 2.5 years, and tapering gradually, I was able to function more normally. Now, in the past month, I feel like my symptoms are returning, but without the high fevers of giant cell arteritis. I just made an appt. with my rheumatologist in a few days, so hopefully she will have some answers for me.
I am so glad there are groups like this one, because I now I will have a lot of questions. Thank you,

Pam H.

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Welcome new members @pam52 and @ajmencke.

Pam, I'm glad you found this group too. Fire away with your questions. Members will share their experiences. Have you seen your rheumatologist in the meantime. I'll be anxious to hear what you learned and your treatment plan is.

@ajmencke, that's a tough spot to be regarding PMR and the vaccine. Good for you for continuing to take precautions as you weigh when or if to get the second shot. You may wish to join the discussion here:

- COVID Booster, Prednisone and PMR https://connect.mayoclinic.org/discussion/covid-booster/
- PMR and Corona Virus (COVID-19) vaccine https://connect.mayoclinic.org/discussion/pmr-and-corona-virus-vaccine/

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mpstetson1 | @mpstetson1 | Sep 4, 2021
In reply to @colleenyoung "@mpstetson1, Regeneron is a pharmaceutical company. Which drug are you referring to? Also, I hope you..." + (show)
@colleenyoung

@mpstetson1, Regeneron is a pharmaceutical company. Which drug are you referring to?

Also, I hope you will upload your picture with you and your dog to your profile.

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REGEN-COV is authorized in adult and pediatric individuals (12 years of age and older weighing at least 40 kg) for post-exposure prophylaxis of COVID-19 in individuals who are at high risk for progression to severe COVID-19, including hospitalization or death, and are:

not fully vaccinated or who are not expected to mount an adequate immune response to complete SARS-CoV-2 vaccination (for example, individuals with immunocompromising conditions including those taking immunosuppressive medications) and
have been exposed to an individual infected with SARS-CoV-2 consistent with close contact criteria per Centers for Disease Control and Prevention.

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ricksch | @ricksch | Sep 4, 2021

Hi my name is Rck I have been diagnosed with poly myalgia and I am currently taking prednisone and I hate prednisone it is still in horrible things to me and I would like to know what else is available that doesn’t have the side effects

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 6, 2021
In reply to @mpstetson1 "REGEN-COV is authorized in adult and pediatric individuals (12 years of age and older weighing at..." + (show)
@mpstetson1

REGEN-COV is authorized in adult and pediatric individuals (12 years of age and older weighing at least 40 kg) for post-exposure prophylaxis of COVID-19 in individuals who are at high risk for progression to severe COVID-19, including hospitalization or death, and are:

not fully vaccinated or who are not expected to mount an adequate immune response to complete SARS-CoV-2 vaccination (for example, individuals with immunocompromising conditions including those taking immunosuppressive medications) and
have been exposed to an individual infected with SARS-CoV-2 consistent with close contact criteria per Centers for Disease Control and Prevention.

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Love the new profile pic @mpstetson1

Thanks for explaining. So back to your original question. Are you asking if REGEN-COV is appropriate for people who have PMR and have been exposed to COVID?

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