Can anyone recommend a Rheumatologist at UCSF in San Francisco?

I recognized this name.
https://www.ucsfhealth.org/providers/dr-vivek-murthy
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But not the same as this person.
https://www.hhs.gov/about/leadership/vivek-murthy.html

Hello Redcoat!
I was wondering if you've had any luck finding a rheumatologist in SF? I also live about 2 miles away from UCSF, in the Inner Richmond district on Lake Street.
My first rheumy was terrible too. All he cared about was getting me off pred in 9 months. Then I found a new GP to take over, who was much more reasonable, but she just quit. My main problem, after 6 years, is adrenal issues when I get down to 1.5mg.
Thanks in advance for any help!

Maybe an endocrinologist would be helpful if you are having adrenal issues.

Adrenal insufficiency isn't really in the realm of a rheumatologist even though they are the doctors who start us on Prednisone in the beginning. About all any rheumatologist can say is to taper off Prednisone ASAP. Prednisone is an easy medication to start but not very easy to stop after the adrenals are suppressed.

In an ideal world, there would be collaboration between a rheumatologist and an endocrinologist.
https://www.endocrine-abstracts.org/ea/0056/ea0056p44

Yes, I figured I need a rheumatologist and endocrinologist. Maybe I should hunt down a new GP who could recommend an endocrinologist.
Thank you!

My GP didn't really appreciate my need for an endocrine referral until my cortisol level was checked. A cortisol level can't be accurately checked until you are able to maintain a low dose of Prednisone for an extended period of time. You also need to be able to hold your Prednisone dose for at least 24 hours but 48 hours was better. An a.m. cortisol level was all I needed for my GP to immediately refer me to an endocrinologist.

There isn't that much an endocrinologist can do except for correctly interpreting cortisol levels. There isn't any treatment to "stimulate" the adrenals except for a very low dose of Prednisone. Hydrocortisone is the preferred treatment for adrenal insufficiency but not absolutely necessary. I stayed on low dose Prednisone.

My endocrinologist said I needed to stay on a 3 mg or less of prednisone for as long as it takes for my cortisol level to improve. It was rather nice to be told NOT to taper Prednisone any lower than 3 mg until my cortisol level improved.

The collaboration with my rheumatologist was to make sure I didn't need Prednisone any longer to treat PMR. Actemra (tocilizumab) is currently treating PMR instead of Prednisone.

@redboat was fortunate to be started on Actemra relatively soon after being diagnosed. I'm not sure if he experienced any Prednisone withdrawal symptoms or adrenal insufficiency.

Thanks so much. This is the second time I've had adrenal trouble, the first was 5 years ago when my GP told me to go ahead and drop straight from 2mg to 1.5mg. Now I know to do a very slow taper. I belong to the PMRGCAuk support group, where I learned how to properly taper, especially at these very low doses. I was tapering from 1.25mg to 1mg when I got in trouble this time. So four days ago I went back to 5mg, where I'll sit for 10 to 14 days, and then drop straight to 3mg, where I'll stay for a while. Yes, I should have my cortisol level checked, and just find a GP since mine recently quit. I'm interested in learning more about Actemra.
Thanks again, and good luck to you

I wouldn't listen to everything you read on PMRGCAuk. The forum with all the people sharing their personal experiences was great. The self proclaimed experts didn't know as much as they thought they knew.

My personal experience is all I share and I'm not an expert. It was amazing when my endocrinologist was able to discern the difference between adrenal insufficiency and PMR. I wasn't able to discern the difference until Actemra was tried.

It took a long time before my cortisol level improved. I mostly stayed on 3 mg of prednisone until that happened. After my cortisol level improved, my endocrinologist said 3 mg was a low dose. She said I could simply stop prednisone without tapering as long as my cortisol level was adequate.

The key for me was having an adequate cortisol level before discontinuing prednisone. I did a fast taper from 3 mg to zero in one week. My endocrinologist said I could restart prednisone "for any reason" if I felt the need. She preferred that I inform her before restarting prednisone to help me decide what to do. She gave me her direct number to call if I had any problems. She didn't require that I call her before restarting Prednisone but she wanted to know what happened. She wasn't sure what would happen and didn't make any predictions.

The other key for me was being on Actemra which controlled PMR and allowed me to maintain a low dose of prednisone. Actemra didn't suppress my adrenal function so that allowed my adrenals time to recover. The experts on PMRGCAuk advised me to increase my prednisone dose for any symptoms resembling PMR --- any pain at all. They also said it was okay to stay on 5 mg or less for the rest of my life. They didn't think my experience with Actemra was pertinent.

I have been off Prednisone for almost 4 years. I still do a monthly infusion of Actemra. I don't have any side effects from Actemra. I would like to find someone with experience with stopping Actemra. My rheumatologist says Actemra is better for me than Prednisone for the rest of my life.

The following link might be interesting to you.

"Mean prednisolone dose the last 3 months and basal P-cortisol were the best and simplest predictors of adrenal function. Most of the glucocorticoid-insufficient patients could discontinue prednisolone with appropriate treatment for adrenal insufficiency."
https://pubmed.ncbi.nlm.nih.gov/32031663/
It took me longer than 3 months to maintain a "low enough" dose of Prednisone which allowed me to discontinue Prednisone. I didn't need any advice to increase my Prednisone dose for any pain at all.

Yes, PMRGCAuk is especially useful for the personal experiences, and finding others with similar struggles.
Staying at 2mg or 3mg until knowing through a test that cortisol had improved makes a lot of sense. Better than just dropping with fingers crossed. As you said, since some of the PMR and adrenal deficiency symptoms do overlap, it's important to know what the cortisol is up to. I guess since I seemed OK my doctor/s never ordered a cortisol test, but when I went too low, even tapering soooo slowly, things finally caught up to me and I knew my misery was adrenal related.
Thank you! Thanks for your time. Really good information. You've been a big help to me.

I like to share my personal experience. I was on Prednisone for more than 12 years after PMR was diagnosed. Prior to being diagnosed with PMR, I took Prednisone for 20 years in high dose bursts followed by a fast taper for other autoimmune conditions.

After long term Prednisone use for PMR, I was ready to concede that I would never get off Prednisone no matter how slowly I tapered. My endocrinologist said it was more complicated than a slow taper. She also said after prolonged Prednisone use, there was no tapering method that was more effective than any other tapering method.

Much of it is having hope and not giving up. Just don't believe people when they assume any and all pain is PMR related after you are diagnosed with PMR. It took me a long time to figure that out. Also, there are some alternatives to long term Prednisone for PMR/GCA if you can find the right rheumatologist. A good endocrinologist was also helpful.

Good luck!

Thanks for sharing this. I thought of asking for your experience but wasn't sure you'd want to share.
There are several autoimmune conditions in my family: RA, Sjogren's, Lupus, Addison's. Probably more that I'm not remembering at the moment! My Norwegian grandfather had PMR and GCA in his 90s. He needed to have his arms taped to hold the skin. I am concerned that something else may be going on with me. It's hard not to get paranoid with PMR, especially when my GP at the time and rheumatologist both told me it would last 9 months! I believe that was wrong though, maybe 25% are so lucky.
"My endocrinologist said it was more complicated than a slow taper." Now there's food for thought. And when we have to increase again we blame ourselves, and the hopelessness sets in.
I definitely want help with this. Have been left to manage it myself. Hope I can find the right rheumatologist. Hope they're out there! Well, you found one.
Again, thank you so much.