Connect
← Return to Clinical Information or Fishbowl?
Discussion
Clinical Information or Fishbowl?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 30 2:14pm | Replies (20)Comment receiving replies
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).
Replies to "https://connect.mayoclinic.org/comment/1022819/. hello @stevieb -- have you discovered the manuscript in the comment i linked above ?..."
I found the following excerpt to be interesting.
Barriers to research:
Fifteen percent of the responding rheumatologists (n = 129) performed research in PMR, of which 64/129 (52%) had participated in clinical trials. Of these, 36/64 (56%) had experienced difficulties with recruitment to trials. Finally, 19/36 (52%) answered that not enough patients were referred, 27/ 36 (75%) that patients had received prednisolone prior to rheumatologic evaluation, 17/36 (47%) that patients did not want to participate, and 14/36 (39%) that diagnosis were uncertain due to prednisolone treatment.
This suggests treatment with prednisone is the main barrier to research. I remember when I was originally diagnosed with PMR. I had at least 20 years of experience with prednisone for the treatment of other autoimmune disorders so when PMR symptoms began all I wanted was a prescription for prednisone. I didn't know anything about PMR and didn't really care as long as I received the prescription.
I received most of my information about adrenal insufficiency from a person who had an adrenal crisis. I didn't completely believe her initially but she made sense. Then I had to admit she was right about everything when I was able to finally taper off prednisone. I think adrenal insufficiency was why I needed prednisone for a very long time. Now I'm not sure how much of it was PMR and how much of it was adrenal insufficiency. I think it was a combination of both.
I have posted the dialog I had with the person. This dialog was the introduction to what she taught me. We switched to exchanging E-mail addresses and continued for months after this dialog.
https://www.healingwell.com/community/default.aspx?f=16&m=4073463
What's the saying? Be careful what you wish for?
So much excellent reading!
Thanks to all .
I was shocked that only 15% of responding Rheumatologists has done research.
I can't vilify medical professionals, there's just too many sacrificing payola practices to serve the common community good. But I am going to contact that non-profit group posted to see if I can get the properly oriented specialists mentioned.
My most local high end research hospital is Johns Hopkins. I haven't been able to access any Adrenal or PMR specialist.
Thanks again to everyone who put out those links!
Connect
ha ha -- look what i just discovered !! :
https://apps-congress.eular.org/eular2024/en-GB/pag/session/2047.
"75th Anniversary of Glucocorticoids - what have we learnt? " -- there will be sessions about gluccocorticoids at the Meeting in June 2024!
And the "Sparrow' pharmaceuticals' trial was posted by me awhile back !