Where to go for comprehensive evaluation?

Welcome @lg5309, I am kind of partial being a Mayo Clinic Rochester patient where my PMR was diagnosed by a rheumatologist. I've had two occurrences and my PMR is now in remission. All Mayo Clinic locations use the multidisciplinary approach - Mayo Clinic: multidisciplinary teamwork, physician-led governance, and patient-centered culture drive world-class health care: https://collections.nlm.nih.gov/catalog/nlm:nlmuid-101537958-pdf.

If you would like to seek help from Mayo Clinic, you can contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

There are many conditions that mimic PMR so I can understand wanting to get a comprehensive evaluation - Diseases that mimic polymyalgia rheumatica (PMR): https://www.medicalnewstoday.com/articles/diseases-that-mimic-polymyalgia-rheumatica.

Have you been diagnosed with PMR but the treatment is not helping with your symptoms?

Yes. I can’t seem to taper down on the predisone. The lowest I can get to is 10mg. Mayo in Jacksonville told me that PMR is not something they treat or specialize is. I do live in Florida. I do see vasculitis centers in the United States. Just wanting to know who has the strongest department.

You are not alone with having trouble tapering off of prednisone. It can be difficult for a lot of folks with PMR. There are many discussions on tapering down on prednisone that might be helpful to scan through - https://connect.mayoclinic.org/search/discussions/?search=Tapering%20off%20of%20Prednisone.

You might find the following tapering plan worth giving a try - Dead slow and nearly stop reduction plan: https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

How long have you been on the prednisone, when were you first diagnosed with PMR?

I was diagnosed in January 2023. Have been on Prednisone since then. I have been attempting the protocol that you suggested and it’s not working for me.

My first time with PMR took me 3 and half years before I was able to taper off. I spent the last six months of that period going back and forth between 1 mg and 1/2 mg of prednisone until I could finally be off with a minimum amount of aches in the morning when I got up.

The Protocol doesn't help with PMR pain at all. I was taking the Protocol for my neuropathy symptoms (numbness and tingling in feet) which I had along with the PMR.

Hmm. I don’t know that there is an academic medical center that “specializes” in PMR. First thought would be Mayo, but that still doesn’t necessarily mean someone would specialize in it, as you found. I have a complex medical situation and other than Mayo, I considered Cleveland Clinic, as they have a similar program where they do an integrated approach.

Are you seeing a rheumatologist right now for your treatment? If so and if they’re not able to help you, can you ask them if they have a colleague they can recommend who treats for a second opinion? Within academic medical centers, rheumatologists can have specialties within specialities—for example, I went to Mayo Rochester and the rheumatologist I saw misdiagnosed me. I came home and stumbled upon a rheumatologist who treats my condition, and she was able to diagnose me.

Or my other thought was, have you considered an Endocrinology consult to see if you may have adrenal insufficiency contributing to the difficulty with the taper? My dad has PMR and we are similarly stuck at 6 mg, but he has not been offered biologics. His rheumatologist referred him to Endocrinology first so we’re waiting for that appointment.