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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story
Polymyalgia Rheumatica (PMR) | Last Active: 1 day ago | Replies (1964)Comment receiving replies
I was diagnosed with Polymyalgia Rheumatica more than a year ago! I have been treated with prednisone for over 1 year!
Ayer 1 year the rheumatologist PA claims I don’t have, she never believed I did… she then said in front of her nurse and a trainee that one in the room believed I had polymyalgia! She then sent me a message saying she ordered 2 more tests and beyond that she can’t do anything else for me from a rheumatologist standpoint! I am beside myself and sick.
Replies to "I was diagnosed with Polymyalgia Rheumatica more than a year ago! I have been treated with..."
@gem3850
I agree with the others on this thread.
Go get a new DR! Like many of us, I was in disagreement with my Rehumy, and my PCP helped me out with counseling to “handle” him.
Enlist your PCP for advice and getting a new Rehumy.
Keep a list of your interactions with DRs. Tests results and your pain levels.
This is important for you, your PCP and other (hopefully new Dr. ) future appts.
And keepppp communication with this group for support and advice.
@gem3850
I had al the symptoms of PMR but my rheumatologist told me that she could only give a diagnosis of PMR after a PET scan where you can see inflammation in almost every joint area. Which was the case..
Then she put me on 15mg prednisolon 2 weeks ago. Now I still have sore/weak wrists and fingers. Maybe you can ask to get a PET scan too? I live in Belgium.
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@gem3850 Get yourself on a list for a new rheumatologist and once you get someone new, tell her about this website. The people here know more than the rhuematologists.
My CRP was 15 when this all started. All other blood work? Perfect. Yet, I couldn't walk. I was a runner of 52 years and all of a sudden, I couldn't walk. I waited ttwo weeks before I accepted the prednisone. They put me on it and within 24 hours I ran 5 miles again.
I'm now weaning. Down to 4mg, and the pain is back but not as bad. My blood work is picture perfect, even CRP is less than 1, but I know with unwavering certainty I either have polymyalgia rheumatica or rhuematoid arthritis. I sit under a heating blanket every morning. Loosen up, then go for a walk or run. But I want off this prednisone.
No one, not even the good rheumatologists, know what we are going through. I think they should read soome comments from this site.
I just changed tto a new rheumatologist and I really like her. I referred her here. Not sure she'll have the time to look, but this disease is different for everyone.
Hang in there.