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.

Jeff Down Under | @legendts | Feb 17, 2021

I have been wondering why so many of you seem to be putting off taking Fosamax as I understood it can be helpful in retaining bone health. My wife was on it for thirteen years before she read that you should only be on it for five years at a time.

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kimh | @kimh | Feb 17, 2021
In reply to @legendts "I have been wondering why so many of you seem to be putting off taking Fosamax..." + (show)
@legendts

I have been wondering why so many of you seem to be putting off taking Fosamax as I understood it can be helpful in retaining bone health. My wife was on it for thirteen years before she read that you should only be on it for five years at a time.

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I actually lost bone while on Fosamax. That's why I get the prolia injection twice annually.

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1 reply
Jeff Down Under | @legendts | Feb 17, 2021
In reply to @kimh "I actually lost bone while on Fosamax. That's why I get the prolia injection twice annually." + (show)
@kimh

I actually lost bone while on Fosamax. That's why I get the prolia injection twice annually.

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Hmmm, prolia may not be for me if needed as I have a latex allergy and break out in a full body itchy rash if I even look at latex.

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heretaunga1947 | @heretaunga1947 | Feb 18, 2021
In reply to @legendts "Many thanks to you all for the warm welcome and your posts specifically to me. I..." + (show)
@legendts

Many thanks to you all for the warm welcome and your posts specifically to me. I was supposed to be looking after my wife (she has CLL) but in this instance she was looking after me! Thank goodness I am back pretty much to normal. I didn’t have any pain or discomfort at all this morning so I’m hoping that continues. I really feel for those of you that had/have so much trouble getting diagnosed as I really only had to persevere with severe symptoms for about three weeks. I am hopeful that getting onto it early may give me a better long term outcome providing I follow a slow tapering off of the Prednisolone. Subject to seeing a rheumatologist and the first available appointment is mid June, I am going to do 15mg for three weeks, 12.5 for the same then 10 for four to six weeks (probably do five weeks) then reduce by 1mg every five weeks to zero. Such a wealth of information on this site and still trying to navigate around it. Keep safe folks. Edit: DEXA scan happening on 26th and last one three years ago was borderline osteoporosis.

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Hi Jeff, I was also fortunate to be diagnosed with PMR within a month of overnight onset of symptoms and started with prednisone of 15 mg. I also followed your intended rate of reduction pretty much and two and a bit years later been off prednisone for a couple of months. Symptoms still there in the background just enough to be aware its there, but very happy to be where I am. Hopefully you will be the same.

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virginiaj | @virginiaj | Feb 18, 2021
In reply to @moni54 "I think "sudden onset" is the key phrase to describe this disease. Suddenly stiff and in..." + (show)
@moni54

I think "sudden onset" is the key phrase to describe this disease. Suddenly stiff and in pain in my case coincided with a very strenuous exercise routine. This misled me for a while but when it got worse and not better after 8 weeks I really wondered what on earth was wrong with me. My PMR journey is posted here so I won't go over it again, but I did see my PCP who sent me to a hematologist but I still went undiagnosed from early July until October 20. When my upper arms started hurting and I couldn't put my hair in a pony tail I knew something was up

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I was wondering why you were referred to a hematologist??

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kimh | @kimh | Feb 18, 2021
In reply to @legendts "Hmmm, prolia may not be for me if needed as I have a latex allergy and..." + (show)
@legendts

Hmmm, prolia may not be for me if needed as I have a latex allergy and break out in a full body itchy rash if I even look at latex.

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Pardon my ignorance, but is there latex in the injection?

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2 replies
rkprice | @rkprice | Feb 18, 2021

I was diagnosed with PMR two and a half years ago at age 71. Started out at 15 mg of Prednisone but had to go up to 25 to get it under control. After nine months my RA doc said he wanted to start me on Methotrexate (12.5 mg weekly) so I could begin to get off the Prednisone. I had three failed tapers from which I had to increase Prednisone back up a few mgs and start again. With each failure my methotrexate was increased. I am now on my fourth taper and am at 3.5 mg per day of prednisone going down 1/2 mg per month and 20 mg of methotrexate weekly. I have very mild pmr symptoms in the am which is when I take my meds and usually no symptoms by mid day. It has been a long slog but I feel like I am making progress. Another MD suggested I talk with my RA doc re: Tocilizmab. Any have any thoughts about this or experience with it?

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ncgal | @ncgal | Feb 18, 2021
In reply to @kimh "Pardon my ignorance, but is there latex in the injection?" + (show)
@kimh

Pardon my ignorance, but is there latex in the injection?

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Kimh. Don't think there is latex in injection as my husband is also very allergic to it and he's had his first vaccine with no problems.

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Jeff Down Under | @legendts | Feb 18, 2021
In reply to @kimh "Pardon my ignorance, but is there latex in the injection?" + (show)
@kimh

Pardon my ignorance, but is there latex in the injection?

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Reading the general information and side effects of Prolia the comment was if you have a latex allergy then consult your doctor or rheumatologist. I made the assumption that possibly a carrier in the injection could be latex. I know earlier fluvax injections used a latex carrier as I had to get a script and purchase my fluvax from the pharmacy. No longer need to with the Fluad Quad though.

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Jeff Down Under | @legendts | Feb 18, 2021
In reply to @heretaunga1947 "Hi Jeff, I was also fortunate to be diagnosed with PMR within a month of overnight..." + (show)
@heretaunga1947

Hi Jeff, I was also fortunate to be diagnosed with PMR within a month of overnight onset of symptoms and started with prednisone of 15 mg. I also followed your intended rate of reduction pretty much and two and a bit years later been off prednisone for a couple of months. Symptoms still there in the background just enough to be aware its there, but very happy to be where I am. Hopefully you will be the same.

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Good luck for the future and trust you get a long remission. Thanks for sharing your experience.

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