UCSF information / Dr Carteron

[Fanciefrancie]

I've already been diagnosed with SJS but I'm not happy with my current Rheumatologist in Sacramento.  In hindsight I should have gone to UCSF when I was first diagnosed 2 years ago but that is in the past.  Do I still try and get into UCSF or are they just for diagnosing?   Is it worth it to see Dr Carteron in SF instead?  I hear she is fantastic. 
Thank you in advance.

[deniselb]

I was shocked when I looked at the UCSF Sjogren's Clinic website. The whole team seems to consist of an ophthalmologist and an oral medicine specialist.  I don't see a rheumatologist listed at all. It says "Evaluation is provided by a team, including oral medicine specialists, ophthalmologists and optometrists."

I don't even have dry eyes or dry mouth. It didn't look like they had anything for me.

I see Dr. Carteron and she is fantastic.

[Fanciefrancie]

Deniselb- I thought the exact same thing  I first went to the doctor for my joint pain, brain fog and overwhelming fatigue.  Dry eyes and dry mouth aren't a major complaint of mine.

[deniselb]

My symptoms are the same as yours. Mouth has gotten a bit dry now six years after diagnosis, but not too bad; eyes not at all dry. I thought this made mine a rare case but Dr. Carteron says it's not that unusual.

[deniselb]

I'm devastated to learn from the Bay Area support group that Dr. Carteron is closing her practice at the end of August.

She is recommending a handful of rheumatologists for Bay Area patients, but says that there isn't anyone who knows Sjogren's. One of the people she recommended was someone I saw once before her, who removed my Sjogren's diagnosis from the records and replaced it with osteoarthritis and chronic pain, neither of which I have. And did this without even telling me.

I don't know what I'm going to do.

[warmwaters]

Sorry to hear Dr Carteron is closing her practice. I saw her for 5 years, and very much liked working with her. I've just moved away from that area, and she mentioned I should find a young rheumy in my new location, and get him or her to be interested in Sjogren's.

She was only seeing patients 2 days a week - she was very busy with other Sjogren's related activies.

I went to UCSF in 2012 when they were doing the Sjogren's Registry, a project that collected samples for future research. I saw Ava Wu, who is the principal in the Sjogren's clinic, and she was very knowledgeable. It was a one time thing, so I don't know much about the clinic overall.

[deniselb]

I had the same idea about trying to find a young rheumatologist. Have you tried to find someone new yet?

I don't think the UCSF clinic is for me. It seems to be completely geared towards dry eye and dry mouth, which are not my problems. I might try their general rheumatology clinic.

Still hard to believe that in a metropolitan area of 7 million people where medicine and medical research are major industries  there was only one Sjogren's specialist.

[irish]

Have you tried finding an Immunologist? These docs specialize in the aspects of autoimmune, immune and allergies and are internists specializing in immunology. I have seen two rheumatologists who were not very good. However, my immunologist is so good that he is able to fill in for rheumatology. You want someone who is knowledgable enough to treat all the pain and arthritis and other symptoms besides the dryness.

A doc who is able to take the bull by the horn and be confident enough to prescribe meds that will help you with your autoimmune issues without agonizing over blood work and dryness. Good luck. Irish

[deniselb]

I haven't thought of an immunologist. Thanks for the suggestion.

[Fanciefrancie]

Oh I am so sorry to hear about this. 

Love the suggestion of Immunologist.  Maybe I'll start researching that route! 

Much thanks!

[deniselb]

All the immunologists I see listed around here seem to be called allergist-immunologists and to mostly treat allergies and asthma. Is this the kind of doc you mean?