Newly diagnosed (both eyes), Seattle

[spbauer1]

I have had good eye care over the years from opthamologists in downtown Seattle but have recently been diagnosed with uveitis on the basis of auto-immunity this past week, and the current loss of eyesight/reading ability/light sensitivity is actually panicing me. Am meeting with rheumatologist early next week but wonder if I should have a "uveitis specialist" lined up already for rheumatologist to speak with. Right now, my eye doctor's practice has sent me to their in=house "retina & vitreous" specialist/surgeon. Am I okay without say, Dr. Foster in Massachusetts, until I can get the auto=immunology aspect nailed down by rheumatologist? This website seems to imply there are no uveitis specialists closer to me than California. True?

[Mike Bartolatz]

Actually Dr Russel Van Gelder is at the University of washington now. been there for a year as head of the department of opthalmology as well as being the Uveitis specialist there. consider a consultation with him.
his contact information can be found at http://www.uveitis.org in the patient information section of the site.

if you need help, I can get it for you.
I live in Tacoma by the way but I have not had DR Vangelder as my uveitis specialist. My uveitis finally burned out at age 54 thank god but I would definitly get a specialist involved if autoimmune disease is suspect. what type do you have?
are you HLA B27 positive or do you have another form of autoimmune disease potentially causing your uveitis?

ask any questions you may develop and I 'll do my best to get you answers.

the main thing is that you are not alone.

wishing you the very best,
Mike

[SanDiegoIritis]

I would add not to panic. I've been through those feelings too, because the onset and development is so intense. But, time and time again it resolves within a few weeks and has left me with no problems but a small cataract forming from the prednisone treatment. My best trick is to lay really low and take Aleve for several days until you can tell it's coming back down. The biggest mistake I've made is to try and push through it and keep up with my work schedule etc. This thing demands your attention, and I've used it to deepen my meditation practice. It's one of the main things you can do with your eyes shut for an extended period of time. Also, I've listened to some good books on tape, but sometimes even that level of concentration is too much for my head. Hope it helps!

Judy in San Diego

P.S. Over 15 years, I've had one episode with both eyes, otherwise it's been only one or the other. I was so happy to read that our moderator had his iritis "burn out", yay there's hope mine will too!

[Mike Bartolatz]

but I'm blind in my left eye with significant vision loss in my right. I would rather I Had EARLY treatment rather than just corticosteroids. I have been doing research and helping moderate this and a couple of other sites for almost 10 years now. those who used the next step on the stepladder approach to treatment of ideopathic, autoimmune uveitis reached durable remission in about 60 - 70 % of the time with NO SIGNIFICANT VISION LOSS. those who stayed on a steroid only approach were the ones who developed other complicatons such as glaucoma, cataracts, retinal vasculitis, hemorrhage and detachment and Cystoid macular edema. not pretty end with a 'burn out'.

I do this support work to keep you from ending up like me.

mike

[SanDiegoIritis]

Dear Mike,

Thanks so much for your service to the world! There will be huge rewards for you somewhere! My doc insists on the steroid approach, and I'm feeling good about the Xybrom (NSAID drop), but afraid to go off the PredForte during this bad flare. Monday I see my Rheumatologist and I'm going to talk to him about a daily NSAID approach to prevent attacks. Thanks again for all your sage advice! I'm still holding out hope also for the Zyflamend, so maybe I'll try that daily approach first before resorting to a NSAID daily, as that has it's side effects tool

Judy in San Diego

[Mike Bartolatz]

mention whatever you are taking OTC to the doctors as they can negatively interact in some cases. be sure to bring the list of ingredients of the stuff to them.
NSAID therapy starts for a six month period of time to see if you can get to an off all steroids without inflammation on the NSAID. if this is accomplished, then one stays at prescription strength for TWO YEARS to allow the immune system to stop making the white blood cells that are mistakenly attacking the eye. then one halves the dose ie. once daily dose at prescription strength for an additional six month time period. then you drop all drugs and hope that the beast won't return.
you have been taking naprosyn but not at prescription strenght nor continuously in the past. hopefully you can tolerate it. sometimes adding a proton pump inhibitor such as nexium or prilosec will protect the stomach. DO NOT ABRUPTLY stop NSaid therapy as it can cause serious heart problems in some individuals (there is a link to information on this in a sticky note in this forum).
I personally think you are making a very good decision. and I hope that this can work for you to get you to remission from this crap.

Wish you the very best,
Mike

[SanDiegoIritis]

Awesome, thanks again! Our interaction which started in a different post, ended up here on Seattle's post, because I was responding to him with some hope. Anyway Mike, thanks for all your support, and I will post after I've had my doc appts to keep everyone informed. I'm also considering a way to get to Dr Levinson in LA, insurance wise.

By the way, I'm so impressed with you being able to maintain this site with your limited vision. How do you do it? Is your reading sight still good?

Judy in San Diego

[Mike Bartolatz]

Big monitor, magnification of text and multi focal length glasses. I've memorized allot of things so I don't have to go do allot of reading. reading with one eye is very tiring. there aren't allot of posts usually so there isn't much to do on a daily basis. I can also type about 50-60 words per minute and learned to compose pretty well while typing.
i'm usually here for about 10 minutes or so every couple of hours checking on the site and answering questions and greeting new members. it beats listening to commentary on the TV concerning things I have no power over but which have made it impossible for my wife to ever retire because of losses to retirement funds from the meltdown of the economy.
life is good, the alternative sucks as I am not looking forward to looking up to see only grass roots and a slab of marble above.

take care,
mike

[SanDiegoIritis]

I think you will see Angels,,,,