1. < Polymyalgia Rheumatica (PMR)

Can anyone recommend a Rheumatologist at UCSF in San Francisco?

Posted by redboat @redboat, Sep 15 1:28pm

I'm looking for recommendations for a rheumatologist at University of California San Francisco (UCSF) Health. They show 18 rheumatologists on staff, but I have no experience with any of them. UCSF is about 2 miles from my home.
https://www.ucsfhealth.org/find-a-doctor/results?doctorsearch=Rheumatology&specialtysearch=true
I was diagnosed with PMR/GCA in early 2023 and have been getting treatment at Kaiser Permanente that has generally been acceptable. Once they got serious, after about 2 weeks of very severe pain, the diagnostic tests Kaiser gave me were very comprehensive. The initial rheumatologist I was assigned was frankly terrible, but I was able to switch to another that I liked a lot; he has since left, and the one I have now is OK. Kaiser has a total of 5 rheumatologists on staff within a short drive of my house, which isn't bad, but that's not as good as UCSF's 18.

As I transition to Medicare, it turns out Kaiser does not take the type of insurance (Medicare Supplement Plan G) I would like to use. Also UCSF has a much larger staff of rheumatologists, and is highly ranked nationally.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

DadCue | @dadcue | Oct 13 8:56am
In reply to @ht123 "Thanks for sharing this. I thought of asking for your experience but wasn't sure you'd want..." + (show)
@ht123

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.

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I understand how you feel. I was lucky that the right rheumatologist found me! The possibility that you have more than PMR given your family history makes things extremely complicated!

For 20 years, I self medicated with leftover Prednisone prescribed by an ophthalmologist for uveitis. I didn't even have a rheumatologist or a GP at the time. I was managing myself with the Prednisone prescribed for uveitis. I blame myself for that because I didn't think I needed a GP let alone a rheumatologist.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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My ophthalmologist said I was very skilled at tapering off Prednisone for uveitis. I was routinely prescribed 60-100 mg of Prednisone for 30+ flares of uveitis in 20 years. I always tapered off Prednisone in about a month.

I had a prior diagnosis of reactive arthritis but I never told my ophthalmologist that I had a lot of joint pain whenever I had a flare of uveitis. I did tell my ophthalmologist about the facial electricity around my eye and he referred me to a neurologist. That was diagnosed as trigeminal neuralgia and I took a lot of Prednisone for that too.
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
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After 20 years, my first rheumatology referral didn't go so well. I was called non-compliant because I wouldn't stop taking Prednisone. My first rheumatologist didn't know that I threw away my entire stash of Prednisone a few months prior to the onset of my PMR symptoms. I randomly decided that I wouldn't take Prednisone anymore because I was taking so much of it for uveitis and trigeminal neuralgia.

My first rheumatologist had some notion that I shouldn't be taking Prednisone for reactive arthritis. She was probably right but she didn't know the entire story.

A second rheumatologist showed up a one of my follow-up visits but I didn't know why. She was very cordial and "requested" that I stop taking Prednisone long enough to see what was going on. I complied with her request and that was when PMR was diagnosed. The second rheumatologist said I still had reactive arthritis and it was "unfortunate" that I now had PMR in addition to all the rest. She was my rheumatologist for the next 15 years until I retired.

For a long time I felt PMR was caused by too much Prednisone. My rheumatologist reassured me that wasn't the case. However, there was an element of truth to that when I was told I had adrenal insufficiency after 12 years of chronic Prednisone use for PMR. That was when an endocrinologist entered the scene.

Everything seems like a horror movie to me now. I would tell my rheumatologist that everything seemed so unreal to me. She told me what I felt was real but some of the Prednisone effects were not real. I didn't believe my rheumatologist when I was told that I was "too young" and "too healthy" to take Prednisone for the rest of my life.

My rheumatologist reassured me that in spite of all the facial pain and visual disturbances I had, she was reasonably sure there was no evidence of GCA. My ophthalmologist was telling me that as well.

It was somewhat ironic when Actemra was tried and the recommendation was to treat me "as if" I had GCA. Otherwise Actemra wouldn't been approved. My rheumatologist needed to advocate on my behalf but first made me promise to try Actemra.

I have now been off Prednisone for almost 4 years. That is remarkable to me since prednisone was a huge part of my life for nearly 35 years.

REPLY
mac1955 | @mac1955 | Oct 13 7:20pm

I in Seattle but see a Rheumatologist inLAvua telehealth. He is in my Aetna PPO and this has been allowed.
https://www.drstuartsilverman.com/

REPLY
daynurse | @daynurse | Oct 27 11:16am

I am very happy with Dr. Alfonso Alguirre at UCSF. He listens carefully each time I see him, examines my body carefully, addresses my issues, and comes up with a plan for handling the Prednisone that allows me some wiggle-room between visits.

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