1. < Polymyalgia Rheumatica (PMR)
Profile picture for betsyhase

PMR symptoms? Still searching for answers

Posted by betsyhase @betsyhase, Apr 25 1:21pm

I have only been dealing with PMR since February and started on Prednisone 12.5mg mg. I am now on 9mg and my joints in my hands are visibly swollen, stiff and painful. My PCP doesn't think it has to do with PMR so tested for RA. Nothing showed up there. I am better on the Prednisone but still having major muscle pain that keeps me inactive. When I push to be on my feet doing simple chores or short distance walking to appointments, I am down for atleast 2 days. I am wondering if I am not on enough Prednisone or just lost so much strength that recovery is slow? Very frustrated!

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

Profile picture for betsyhase
betsyhase | @betsyhase | Apr 26 6:16pm
In reply to @gmdb "@betsyhase as was already suggesred it could be seronegative RA which can't be detected in the..." + (show)
Profile picture for gmdb @gmdb

@betsyhase as was already suggesred it could be seronegative RA which can't be detected in the blood work. It often mimics PMR symptoms and can only really be tested for in a PET scan - where it shows as inflamed tissue inside the joints. PMR will show as inflamed tissues in the muscles and around the joints, not not inside. It is an important distinction because prednisone is not the best treatment for RA. Best of luck.

Jump to this post

@gmdb
Thank you for the explanation. I will discuss this with my PCP. He is researching but this is not his specialty but trying until I get to a specialist.
I too am trying to learn and absorb this new diagnosis.

REPLY
1 reply
Profile picture for gmdb
gmdb | @gmdb | Apr 26 6:59pm
In reply to @betsyhase "@gmdb Thank you for the explanation. I will discuss this with my PCP. He is researching..." + (show)
Profile picture for betsyhase @betsyhase

@gmdb
Thank you for the explanation. I will discuss this with my PCP. He is researching but this is not his specialty but trying until I get to a specialist.
I too am trying to learn and absorb this new diagnosis.

Jump to this post

@betsyhase there is unfortunately quite a bit to learn. I saw that one rheumatologist say that he tells patients with our illness that they have a new full-time job - understanding and managing their illness.

m

REPLY
2 replies
Profile picture for betsyhase
betsyhase | @betsyhase | Apr 26 8:59pm
In reply to @gmdb "@betsyhase there is unfortunately quite a bit to learn. I saw that one rheumatologist say that..." + (show)
Profile picture for gmdb @gmdb

@betsyhase there is unfortunately quite a bit to learn. I saw that one rheumatologist say that he tells patients with our illness that they have a new full-time job - understanding and managing their illness.

m

Jump to this post

@gmdb
Well, atleast he has a sence of humor!
Betsy

REPLY
Profile picture for gypsyrozbud
gypsyrozbud | @gypsyrozbud | Apr 27 10:07am

You need to get a rheumatologist who will take an ultrasound scan of your hands to physically look at them for Rheumatoid arthritis.
My blood tests were negative for RA and have lived with PMR for a year, unable to taper below 10 mg of prednisone…until I saw a rheumatologist last week who did the scans of my hands and feet which have all been swollen and painful. He says I have late onset seronegative RA, not PMR! Now I must start taking Methotrexate to halt the progression of the disease and deal with the pain…and continue to try to taper off prednisone.

REPLY
Profile picture for betsyhase
betsyhase | @betsyhase | May 5 10:42am

This is mainly an update.
I finally have an appointment with a Rheumatologist!!! Not until the end of July unless there is a cancelation.
I am still on a 1mg Prednisone taper per month and down to 8mg. Noticing increasing pain/stiffness in hands and wrists. Lower body still pain and stiffness but not sure if it is PMR. My PCP is wondering if Serion negative RA might be a factor. Hopefully all this is moving me towards a correct diagnosis.

REPLY
Profile picture for pah17
pah17 | @pah17 | May 5 11:29pm
In reply to @gmdb "@betsyhase there is unfortunately quite a bit to learn. I saw that one rheumatologist say that..." + (show)
Profile picture for gmdb @gmdb

@betsyhase there is unfortunately quite a bit to learn. I saw that one rheumatologist say that he tells patients with our illness that they have a new full-time job - understanding and managing their illness.

m

Jump to this post

@gmdb I like that.

REPLY
Profile picture for mackerman2026
mackerman2026 | @mackerman2026 | May 6 7:29am

Good luck, and best wishes.

REPLY
Please sign in or register to post a reply.