I was wondering if anyone out there has been diagnosed with Sympethetic Ophthalmia and what treatment they are getting for this type of Uveitis? I'm a 47 year old male with one eye that has been struggling with this losing battle for 7 years now.
In the past I have received pred. and eye drops (acular,restasis) but now I'm experiencing more blurr, double vision, loss of acuity and the right peripherral portion of the vision is blurred out like what a TV program would do to block out someone's face if they are not authorized to televise that person.
I just went to a new Dr and she is looking to try Cellcept. (Dr Grace Levy Clark (St Lukes)
Any body care have any experience here? I would love to hear from anyone.
Garry,
Please go to the specialist list at www.uveitis.org and find the closest specialist on the list or contact Dr Foster if you are on the East Coast of the USA.
when sympathetic opthalmia occurs, it is a very serious thing (rather than just bilateral uveitis).
drugs such as Cellcept may well be in your future as a means to try to control your immune system attacking your good eye but I am not a doctor so all I can do is encourage you to seek out the very best care that you possibly can.
I feel your fright. Could you please also post your question on the Ask Dr. Foster forum and get his input. Use this link to post a question there. We will also try to respond here. There are many people here fighting for their vision who know what you are going through. While their uveitis may not have been caused by the same thing that yours is, the battle is well known.
Re: New Memeber with Questions
Thanks Mike & Liz so much for your response. I appreciate this forum very much! For years I have been searching to find out more information on the treatment some are getting for Uveitis.
Do either if you know what portion of the eye Sympethetic Opth. typically effects or what the medical terminology is for this? ie: bi-lateral uveitis
Re: New Memeber with Questions
You are using the correct term. My understanding that sometimes, after one eye is injured, an autoimmune reaction takes place in the injured eye. The immune system, in some cases, will become confused, and begin to attach similar tissue in the other eye. Bilateral uveitis is a result.
This article explains some things about what causes Sympathetic Ophthalmia. Your case may not have the same symptoms, but the cause is similar.
Where are you? Are you under the care of a specialist?
Re: New Memeber with Questions
That was a great article on SO. Thanks so much for the link Liz. I live in Tampa FL and just saw a new Uveitis Dr for this condition. Hopefully she can help.
Gary
I don't know of any fellowship trained uveitis specialists in Tampa. Can you check on her credentials and, if she has specialist training, tell her about the specialist list on uveitis.org and ask her to submit her name and contact information for posting there. What is a uvitis specialist?
In Miami, Janet Davis is a well trained specialist.
Another option to consider if you could possibly do this is to travel to Boston to see Dr. Foster in consultation. He is superb at collaborating with local physicians who are interested in have a specialist on the team. It means traveling her 3-4 times a year then seeing a local team, but with Foster's experience driving the bus. Many have had to do that, and I cannot imagine a more daunting reason to do so that your situation. I read your note on Ask Dr. Foster describing your situation.
That is what I would do in your situation. Why? From what you describe of your situation and symptoms, time is of the essence. You simply cannot wait months for someone to work out a plan.
I am pretty upset to learn that you had consultation at NIH and they did not appraise you of this treatment option. Did they?
Hang in there. Glad the link was helpful.
Liz
P.S. If you make it to Boston, the first cup of coffee is on me!
I was at the NIH in 2004. They did extensive testingand were very interested in the results since I was an unusual case. However, they reported that my condition was "quite". Since the vision corrected to 20/16, they chose not to recommend treatment at that time.
Also, I noticed that Dr Grace Levy Clark was listed on Dr Foster's site, but under the St Petersburg, FL area which is close to Tampa, FL.
I think your advice to come to Boston and see Dr Foster maybe what I need to do. But first, I think it might be prudent to get the results of my ERG and to find out exactly what treatment she recommends.
Thanks so much for taking the time to converse with me about this subject. I don't know your condition, but I thought I read somewhere here that you are a Uveitus patient as well. Am I right and if so what may I ask is your experience?
That is worth a shot . . . but not if it takes much time. Time is of the essence. Your's is an urgent situation.
I researched her background; trained at NIH! If she doesn't recommend what you read on Ask Dr. Foster, head to Boston. She is a cornea specialist mostly, but well trained.
Also in Florida is Victor Perez. In Miami I think. He is listed on the website. He trained with Dr. Foster and is superb.
Yes, I have (had) uveitis and scleritis. Developed about 10 years ago, when I was in my 50's. Both eyes. Also developed scleritis (wicked disease) and glaucoma. The OID is in remission (cured). It was a long haul, but I got there.
I am going to make a copy of this thread and place it in the SUPPORT section. We can continue the conversation there. Use this link to continue the discussion, or just scroll down in that forum.
Re: New Member with Questions
Glad to hear yours is in remission. You must of been very pleased to hear that!
Thanks again for your help Liz. You are a gem!
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