Introduction, and a question

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jack_mac
Posts:8
Joined:Thu May 21, 2009 2:03 pm
Introduction, and a question

Post by jack_mac » Sun May 24, 2009 1:00 pm

Mike - I just discovered this site. Thanks for this amazing resource.

I’m a 40yr old male. I’m 3 weeks into my first ever Iritis attack. My eye doctor has me on Pred Forte drops every hour, plus Cyclogyl for dilation, and 20mg prednisone orally 3x per day. I have history of auto-immune problems (including Guillain-Barre, Raynaud’s, Plurisy, Psoriasis/Eczema, anemia), but I’ve never been diagnosed. There is also a lot of auto-immune within my immediate family. I never connected the dots before this Iritis outbreak.

I have a question re: selecting an Ocular Immunologist. I consulted your list of Iritis specialists and found 25 within easy driving distance. I live 2 hours from both NYC and Phila(10 doctors listed) and about 3+ hrs from the Balt/Wash/Northern Va area (15 doctors listed), and I have family living in DC. Any specific recommendation amongst all these specialists? I’ll have to check with my insurance provider to see which ones they will allow me to see, but if I knew the names of a few Docs that were really considered exceptional, then I could fight to get a referral to one of these.

Also, regarding the specialists, is the care typically on-going, or is it more just periodic visits. For instance, if you typically see the specalist just for the initial diagnosis and treatment plan, with an occasional follow-up (as opposed to an on-going relationship), then I would consider traveling to see someone like Dr Foster at Harvard, who you suggest is the leading expert.

Thanks again for this site.

Mike Bartolatz
Posts:6595
Joined:Fri Feb 06, 2004 9:58 pm

Re: Introduction, and a question

Post by Mike Bartolatz » Sun May 24, 2009 6:12 pm

Jack
first of all, welcome to the group! from your introduction it appears that you have been reading here extensively which I must commend you for as being pro active in your care will mean the best long term outcome.
psoriasis and psoriatic arthritis are directly linked to uveitis through the HLA B27 gene as well as through the IL23R and ARTS1 genes. often treatment for the underlying autoimmune disease will also treat the uveitis and over about 2 years of being off all steroids without inflammation will result in Durable remission of the Iritis. presently there is a new drug in trial with Dr Foster that affects IL17 a pro inflammatory cytokine seen in uveitis patients. another new drug approved for Psoriasis is usetekinumab which also affects IL17 through the TH17 white blood cells reguated by the IL23R gene.
the closest doctors to you are Dr Chu in NJ, Dr Samson in NYC and DR Quan Nguyen in Baltimore.
finding a local doctor willing to work with the specialist is key to all of this. often it will require an opthalmologist to monitor the effect of the treatment protocol on the eyes and a rheumatologist or oncologist to monitor the drugs impact on other body systems such as liver, kidneys, heart etc. DR Nguyen is also a specialst in Retina as well as being a fellowship trained Ocular Immunologist. I don't recommend anyone in Pennsylvania. or other States near you.
with your complex medical history, you need one of these doctors on your team to develop a plan and then to follow up periodically perhaps at six week intervals after the first couple of visits at perhaps closer intervals of three weeks or so to get the uveitis under control.
Have you got dry eyes and dry mouth? your multiple symptoms are often seen in individuals with Sytemic Lupus Erythematosus and/or Sjogren's syndrome. have you been tested for anti nuclear antibodies, rheumatoid Factor, HLA B27 etc?
Wish you the best,
mike
Mike Bartolatz
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