Clinical Information or Fishbowl?

It would be nice to have professional medical advice or someone with real expertise on the subjects discussed on these forums.

I value everyone’s personal experiences but that doesn’t substitute for professional medical advice. I try to explain what I have learned from years of experience as a patient. However, my doctors didn’t always agree with what I thought I knew. I would then concede my doctors knew more than me. However, most of my doctors were humble enough to admit they didn’t know everything.

Doctors and patients should learn from each other but that doesn’t always happen.

@stevieb, good questions. Mayo Clinic Connect is an online community, connecting patients and family caregivers with each other. You do not have to be a Mayo Clinic patient or caregiver to join the conversations. Community members share experiences, ask questions, find answers, give and get support and exchange vital information. Mayo Clinic values patient and caregiver knowledge and recognizes you as experts by experience.

The forum discussions are moderated by staff, such as myself. Moderators are connecters, helping you to find others to connect with. We also monitor to ensure that the discussions remain respectful, inclusive and free of misinformation as outlined by the Terms of Use and the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/
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@dadcue, I agree. Personal experiences shared do not substitute for professional medical advice. And members should never disregard professional medical advice or delay in seeking it because of something they have read on the community.

That said, doctors, researchers, nurses, educators, health designers and many people who work at Mayo Clinic learn a lot from members at Mayo Clinic Connect. Steve, the fishbowl analogy is a good one. But we don't use the information shared by members without their permission. Some of my favorite spin off initiatives from Connect have been the special projects members have participated in with Mayo Clinic, such as offered tips for education for other patients, invited to take part in research, featured in patient stories, or given feedback on the design of patient education websites and more.

Are there more opportunities to work together? You bet. More things to come. 🙂

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.

Is there a mechanism to get a "second opinion" about specific topics from medical experts in the field of PMR/GCA? I don't mean a second opinion about a diagnosis or treatment recommendations that would replace my own personal physician's opinion.

Most of the information I receive is from a qualified medical professional that I have encountered as a patient. The advantage is they know me personally and I can ask them questions. I can google information about the topic to get additional information if I'm interested. However, almost all research articles toss out information with the disclaimer, "more research is needed." I think doctors converse all the time with each other and still have differing opinions. I think it would be interesting to see what other medical experts in the field of PMR/GCA think compared to what my doctors think.

There is tons of information about the negative effects of long term prednisone use. Yet, for PMR/GCA, long term prednisone is said to be the "best option" to the extent that I was discouraged from trying anything else. There is no shortage of "patient experts" so a few professional medical opinions would be nice too. For example, I'm interested in biologics as treatment for autoimmune disorders in general. I don't necessarily like to "promote" any specific biologic just because one worked for me. I wouldn't want to discourage one either just because it didn't work for me.

Just wondering ... some topics are beyond the realm of most patients but you have to rely on another patient's personal experience which might be misleading.

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).

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 !

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

https://sparrowpharma.com/news/sparrow-announcedcohor4 recent news from Sparrow !
( nice name , i used to work at bluebird bio! )

I'm going to be re-reading your info several times!
Thanks!
s.

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!