Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Just diagnosed and processing my experiences. Grateful even for old comments to figure this out.

Welcome @kaljean, Sorry to hear that you have joined our PMR club but there’s a lot of support here and hopefully will help you navigate this challenging condition. You might find it helpful to scan through the many different discussions in the PMR group. Here’s a link that lists the discussions - https://connect.mayoclinic.org/group/polymyalgia-rheumatica-pmr/.

Have you started any treatments? Do you keep a daily journal of your pain when you get up in the morning?

Not new to the group, enjoy it for help. I am on a descending ladder of prednisone for the next three months and on an ascending ladder of sulfaSALAzine for same period. My exhaustion level has doubled since the mixing of the two meds. Is anyone else taking sulfasalazine and if so what are your experiences. This is quite miserable.
Thanks

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.

@johnbishop my Sed rate is 47 my CRP is 7, both elevated. I still have symptoms and feel horrible. I was on prednisone for 1 year I am currently being weaned off of it and was told I never had it….so what do i, have no other diagnosis given!

Hello @gem3850, Sorry to hear that you haven't received much help and treatment from your rheumatologist and doctors. I think that the following discussions started by @dadcue might be helpful for you to understand more about PMR:
-- Comprehensive Overview Of PMR: https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- Is progress being made in understanding PMR/GCA?
https://connect.mayoclinic.org/discussion/is-progress-being-made-in-understanding-pmrgca/
You mention you still have symptoms and feel pretty bad. If the prednisone hasn't been providing any relief for your symptoms, have you considered seeking a second opinion or help from a different rheumatologist/doctor?

@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.

@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.

@johnbishop I actually have considered a second opinion. I spoke to the office about seeing another rheumatologist and they want me to see the head of the practice, but not until I have an mri pf the stomach and brain. That means I won’t see him until March.

@cyndiefromnci don’t understand all these tests. All I know is I feel like crap, my rheumatologist has reall not helped, unless it is helpful that she treated me for 1 year and never believed I had PMR. I have to find a new Rheumatologist.