Looking for Sjogrens rheumatologist in Tampa Bay Area Florida

Posted by med951 @med951, 5 days ago

I like my rheumatologist but he doesn’t seem to be all that experienced with Sjogrens. I have lots of neuro complications. I am on Azathiaprine (Imuran) but it’s not helping.
I’m looking for suggestions for rheumatologists in the Tampa area who specialize in Sjogrens. Also, looking for a neurologist who treats Sjogrens neuropathy. My neuro specializes in MS and not well versed in outliers.
Thank you!
I have tried getting into Mayo but they say there are no openings.

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suetex | @suetex | 4 days ago

I am a Sjogren's patient in Texas and I got lucky and found an expert on it on my 3rd try and my Neurologist is an expert as well. I am writing to mention that I read that Imuran is a risk factor for Lymphoma and Sjogren's is too. Just thought I would mention it. There are two publications (free)

Becky, Volunteer Mentor | @becsbuddy | 3 days ago

@med951 It is difficult finding the correct doctors, isn’t it? I hope this information will help. These two programs are non-governmental and exist for autoimmune patients! And others who would like the help.
GARD. Organization of genetic and rare diseases
https://rarediseases.info.nih.gov/.
NORD. National organization for rare diseases
https://rarediseases.org/
They keep a list of doctors in each state. You may have to drive. Just give them a call!