1. < Polymyalgia Rheumatica (PMR)
Profile picture for Ethan McConkey, Moderator

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.

Profile picture for jabrown0407
jabrown0407 | @jabrown0407 | Apr 9 5:52am
In reply to @kjoed53 "@marciai Are there any blood results that indicate a hematologist should take a look? My rheumatologist..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
Are there any blood results that indicate a hematologist should take a look? My rheumatologist is concerned that I may have MGUS so he has referred me to a friend of his in hematology.

Jump to this post

@kjoed53 I was investigated by a hematologist and she believed I had MGUS as well. When I tried to confirm it with a hematologist at a local teaching hospital he explained why I did not have it and she agreed with him. This was several years ago when less was known about MGUS. I had a friend, not a PMR patient, who was Dx with MGUS about 3 years ago. She was re-evaluated recently and they removed the MGUS diagnosis. So please proceed with some caution. I would say that PMR and MGUS must share some symptoms in some cases since I know of other PMR patients having been evaluated for MGUS and not getting the Dx. Your rheumy is correct to send you for evaluation.

REPLY
1 reply
Profile picture for kjoed53
kjoed53 | @kjoed53 | Apr 9 6:51am
In reply to @jabrown0407 "@kjoed53 I was investigated by a hematologist and she believed I had MGUS as well. When..." + (show)
Profile picture for jabrown0407 @jabrown0407

@kjoed53 I was investigated by a hematologist and she believed I had MGUS as well. When I tried to confirm it with a hematologist at a local teaching hospital he explained why I did not have it and she agreed with him. This was several years ago when less was known about MGUS. I had a friend, not a PMR patient, who was Dx with MGUS about 3 years ago. She was re-evaluated recently and they removed the MGUS diagnosis. So please proceed with some caution. I would say that PMR and MGUS must share some symptoms in some cases since I know of other PMR patients having been evaluated for MGUS and not getting the Dx. Your rheumy is correct to send you for evaluation.

Jump to this post

@jabrown0407
Thanks. From what I understand, MGUS doesn't require anything but routine monitoring unless it develops into something more serious.

REPLY
Profile picture for kjoed53
kjoed53 | @kjoed53 | Apr 9 7:45am
In reply to @marciai "@kjoed53 Saw my rheumatologist today and she doesn’t think it’s pmr or costochondritis, although my inflammation..." + (show)
Profile picture for marciai @marciai

@kjoed53 Saw my rheumatologist today and she doesn’t think it’s pmr or costochondritis, although my inflammation markers are high again. Going back up to 5 mg/day and having chest x-rays done to be followed with appt with my primary.Would love to get some answers.

Jump to this post

@marciai
My rheumatologist wasn't convinced of his PMR diagnosis and still isn't, but because I responded to prednisone he is saying that PMR is the most probable. It doesn't rule out there being a secondary issue though so that's the direction my journey is now taking. After I see the hematologist, hopefully I'll have more answers.

REPLY
2 replies
Profile picture for marciai
marciai | @marciai | Apr 9 1:19pm
In reply to @kjoed53 "@marciai My rheumatologist wasn't convinced of his PMR diagnosis and still isn't, but because I responded..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
My rheumatologist wasn't convinced of his PMR diagnosis and still isn't, but because I responded to prednisone he is saying that PMR is the most probable. It doesn't rule out there being a secondary issue though so that's the direction my journey is now taking. After I see the hematologist, hopefully I'll have more answers.

Jump to this post

@kjoed53 Getting definite answers is challenging when there seem to be so many things that can cause inflammation and pain as we age. With the increase in my inflammation markers I’m also in the “PMR most probable” category.

REPLY
Profile picture for marciai
marciai | @marciai | Apr 9 1:21pm
In reply to @jabrown0407 "@marciai Please go to the top of the PMR Chat Room and enter "costochondritis" in the..." + (show)
Profile picture for jabrown0407 @jabrown0407

@marciai Please go to the top of the PMR Chat Room and enter "costochondritis" in the search field if you have not done this already. If you go to the top of the Connect home page you will find everywhere inside of all the discussion where the word is used - jic you do that by mistake. Anway - unfortunately many people do not read this site daily and you mentioned you wanted the info by today. I hope this not gets to you in time to make a difference.

Jump to this post

@jabrown0407 This was helpful — thank you.

REPLY
Profile picture for marciai
marciai | @marciai | Apr 9 1:25pm
In reply to @kjoed53 "@marciai Are there any blood results that indicate a hematologist should take a look? My rheumatologist..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
Are there any blood results that indicate a hematologist should take a look? My rheumatologist is concerned that I may have MGUS so he has referred me to a friend of his in hematology.

Jump to this post

@kjoed53 I was seen by a hematology oncologist last fall who did not find anything concerning in my bloodwork, although I don’t recall any discussion of MGUS.

REPLY
1 reply
Profile picture for kjoed53
kjoed53 | @kjoed53 | Apr 9 2:31pm
In reply to @marciai "@kjoed53 I was seen by a hematology oncologist last fall who did not find anything concerning..." + (show)
Profile picture for marciai @marciai

@kjoed53 I was seen by a hematology oncologist last fall who did not find anything concerning in my bloodwork, although I don’t recall any discussion of MGUS.

Jump to this post

@marciai
I have some results that are not only off the charts, they're several charts over...lol

REPLY
1 reply
Profile picture for marciai
marciai | @marciai | Apr 9 3:46pm
In reply to @kjoed53 "@marciai I have some results that are not only off the charts, they're several charts over...lol" + (show)
Profile picture for kjoed53 @kjoed53

@marciai
I have some results that are not only off the charts, they're several charts over...lol

Jump to this post

@kjoed53 Keeping a sense of humor does seem to be a critical component of the PMR journey.😏

REPLY
Profile picture for pah17
pah17 | @pah17 | Apr 9 9:37pm
In reply to @kjoed53 "@marciai My rheumatologist wasn't convinced of his PMR diagnosis and still isn't, but because I responded..." + (show)
Profile picture for kjoed53 @kjoed53

@marciai
My rheumatologist wasn't convinced of his PMR diagnosis and still isn't, but because I responded to prednisone he is saying that PMR is the most probable. It doesn't rule out there being a secondary issue though so that's the direction my journey is now taking. After I see the hematologist, hopefully I'll have more answers.

Jump to this post

@kjoed53 and I'm in that category re: both PMR and GCA.

REPLY
View MoreView Less
Please sign in or register to post a reply.