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Clinical Information or Fishbowl?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 30 2:14pm | Replies (20)Comment receiving replies
Fantastic. (I was confident I would not be disappointed with any position from Mayo)
BUT:
The majority of what I read are from individuals desperate for two things:
1) How to make lifestyle adjustments that allow functionality under the effects of PMR..... which besides diet, activity, and rest include how to encourage the body to naturally begin manufacturing Cordisol.
2) How to finally eliminate the use of Prednisone, and understand why the body would even make enough Cordisol as long as the cordisol was already supplied by the Prednisone.
I'm getting zero information from my Rheumatologist and almost zero from my endocrinologist.
Informative Abstracts on Cordisol are coming from Neurologists.
I am a 73 year old who has been surfing on an international level (3 meter waves) for 58 years. I have for decades lived a lifestyle dedicated to physical, mental, spiritual health. I have a foundation to maintain wellness. But it has always been based on good and effective information.
I think a case can be made for Mayo to " break the blood brain barrier" (you are the brain, we are the blood)...... And either say:
1) Here is some interesting reading for a particular discussion
2) We don't know anymore than you guys. We have no answers for you.
Replies to "Fantastic. (I was confident I would not be disappointed with any position from Mayo) BUT: The..."
I am not one of the majority you write about. I have been on and off prednisone for 30 years and currently one. I like prednisone. It really works for me with the pain of PMR and arthritis. I am 78 yo and get a bone density scan every year and I am still normal even though I am not taking Flosomax (sp) as my rheumatologist has suggested. Even though I have normal bone density my rheumatologist says I have a 10% chance of a fracture. I guess if I have a 10% others much be much worse since I am normal in that department.
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https://connect.mayoclinic.org/comment/1022819/. hello @stevieb -- have you discovered the manuscript in the comment i linked above ? @dadcue was the person who wieghed in on that and other conversations about "adrenal insufficiency" - I highlighted this in green : "When discussing glucocorticoid taper- ing, patients should be counselled about the possibility of withdrawal symptoms". and i happen to agree with you about getting "zero information" from my rheumatologist - oh well !
Here is a paper , published in 2023 , in which - for the first time i can think of - that the authors mention adrenal function! It's an interesting manuscript because it also discusses alternate Dx !
Do you have a login for the American college of Rheumatology ? - or the European college of Rhuematology ? I was interested to know who are the subject matter experts /key opinion leaders in PMR --
The Mayo CLinic's very own
Eric L. Matteson has authored many papers that i have read ( see below).
PMR (1)Matza Rheumatology, 2023, 00, 1-9 (PMR-1Matza-Rheumatology-2023-00-1–9.pdf)
2023 clinical lab and US findings 11739_2023_Article_3373 (2023-clinical-lab-and-US-findings-11739_2023_Article_3373.pdf)