Uveitis / VKH (Vogt Koyanagi Harada Disease)

[salvarez0525]

Hello, I just recently found this site, my husband has been suffering of VKH manifested into Uveitis since he was approximately 15 years old. This December he will be 30. He has been "legally blind" in the state of Florida 3 times already & just had another flare up. We seem to notice its always around this time of the year (during the spring or sometimes winter). He received the avastin injection yet again 2 days ago, & continues to be on prednisone (normally 10mg 1x a day, to currently 20mg, 3 in the am, 1x a day for 3 weeks, then 2 for 2 weeks. Last summer he came off methatraxate & throughout the years hes been on a number of medications & drops. He unfortunately doesnt do well with the drops as far as using them as directed due to the uncomfortness he feels. He has been seeing for years Dr.Janet Davis at the Bascom Palmer in Miami, but he's reached a point in which he feels like he is a guinea pig; a science experiment & would like to consult with another VKH/Uveitis specialist. Is there someone else you highly recommend? What sort of treatment would be beneficial? What is the lastest update on reseach & discoveries with Uveitis?

[salvarez0525]

I forgot to mention his Uveitis is an autoimmune, idiopathic condition.

[Mike Bartolatz]

the specialist I would recommend would be Dr C Stephen Foster in Cambridge MASS. USA. he is the very best Ocular Immunologist in the World.
contact information For DR Foster can be found at his website http://www.uveitis.org located in the PATIENT information section of the site on the SPECIALIST list.

Dr Davis is an excellent ocular immunologist too.

VHK should be just In the anterior chamber at this time. it first impacts the retina and moves to the anterior chamber causing iritis.

I don't deal with VKH that often here so I suggest that you join a support group affiliated with DR Foster's ocular Immunology and Uveitis Foundation http://www.uosg.org I moderate forums there and can assist you better through that forum.

wish your husband quiet eyes,
Mike

[hallar1]

My mother is 70 years old and also lives in Florida and is legally blind. She was diagnosed about 45 years ago and went blind for a year or so but then regained sight. She has suffered for years with no peripheral vision and can't go to movie theatres because she is literally blind in dark areas. She also suffers with back and leg pain that I have read may be related. Prior to having cataract surgery last year her condition was stated to be "stable" by her ophthalmologist however since the surgery she is barely able to see...what she does see is very blurry. Where she could previously read without glasses now needs a magnifying glass and that is also a bit difficult. I have been researching information online and ran across this site and saw your post. I was thinking about trying to get an appointment with Dr. Davis and saw your concern. My mother is up in age and we are really looking to see if there is anything that can be done but she is very hesitant to endure any additional laser surgeries or continual probing in her eyes as she has a fear now that anytime they go in it will result in an increase of vision loss. I would be willing to take her to Massachusetts if we can find her the help she needs. What has been your experience since visiting Dr. Foster? How would you compare Dr. Foster and Dr. Davis? Any suggestions for me?

Thank you!!!!

[Mike Bartolatz]

Dr Foster it the top ocular immunologist in the World. go see him,

mike

[hallar1]

Thank you for your quick response. I actually found an email address for Dr. Foster and contacted him and he advised me to see Dr. Davis and that she was superb. Maybe due to our location (Florida) he thought that would be best. My main focus is that she is able to see someone that has/is treating this disease in patients as I fear some of the things her eye doctor suggests for her may actually be doing more harm than good.

[Mike Bartolatz]

DR Davis is a very good Ocular Immunologist. she may suggest things entirely different from those that your current Doctor is recommending. let her 'drive the bus'. usually VKH starts in the back of the eye, then quiets down only to start up in the anterior chamber. I don't know if treatment has changed over the past few years as it has been some time since I've interacted with anyone with VKH.

wish your mom the very best,
Mike

[hallar1]

This is very reassuring and gives me hope...thank you so much...this site is great!!!!!

[Mike Bartolatz]

Glad I have been able to comfort you.

take care,
Mike