MUST study patient in Florida

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peggyk Registered User (8/19/08 10:02 pm)	MUST study patient in Florida Hi, I have been diagnoised with Uveitis for just over a year. After 7 months on steroids I joined the MUST study. I had implants put in this past January. I am finally off the steroids and my vision is getting better. I can now drive at night and be out in the sun for short periods of time without getting thousands of floters. Do you know it that ever will go away? My doctor believes that I also have sarcoidosis in my eyes, does anyone else have this? It is not present in my lungs so there is no way to biopsy and determine an exact diagnosis for the white lesions. Any ideas????? Suggestions?
Webmaster Administrator (8/20/08 8:07 pm)	Re: MUST study patient in Florida Hi. Welcome to the board. Sarcoid is a systemic illness. It can manifest first in the eyes. The longest interval between presentation in the eyes and systemic diagnosis in the Harvard study was 7 years. In an article published by Harvard (link) about the use of Methotrexate (MTX) for treatment of sarcoid related uveitis, MXT was 100% effective for treating sarcoid-related uveitis. By "white spots" do you mean the spots you see when you look out through your eyes? If so, all of that is a byproduct of inflammation in your eyes; it is trapped in the VITREOUS. Look at the links above and click on UVEITIS GLOSSARY. Look up the term VITREOUS. Also, under the term PARS PLANITIS there are excellent photographs of a clouded viterous. Stopping the inflammation is the first step. Once it is cured, if your vision is severely affected by the clouded vitreous, surgery is the only way to clear it up. Were you offered a trial of immunosuppression therapy as well as the MUST study? This is more information about the use of IMT in treatment of uveitis. You may want to read up on IMT therapy as well as learn more about the MUST study. I'm sorry that you are having so much difficulty and glad that your enrollment in the MUST study has been of some benefit to you. Welcome to our community. Liz Edited by: Webmaster at: 8/20/08 8:35 pm
peggyk Registered User (8/27/08 9:05 pm)	Re: MUST study patient in Florida Thank you for the information. My offical diganosis is "disseminated chorioretinitis". I came back from my study visit today and my condition as changed. The white lesions are more prodominate. It could be that the implants have cleared up the inflimation in my eyes and therefor the lesions look larger or that the redisert implants have not done what they were expected to do for the lesions. As per your response, my Dr did discuss the immu treatment, but do to the severity of the lesions and the rapid growth, she recommended the study. ( I would of dropped out of the study had the oral treatment been picked). Another change is my eye pressure, very elevated. I started on combigan eye drops for the Glaucoma. She is very concerned with the lesions and the quick change in pressure, I will be going every week to have the pressure checked and back to see her every month. I am looking for people to talk to that understand.
Webmaster Administrator (8/28/08 7:44 pm)	Re: MUST study patient in Florida I have steroid induced glaucoma. I am sorry that you are experiencing this. You disease sounds very complicated. I don't think at this point that it is "either / or" for you; talk to them about IMT right now. Consider a consultation about treatment options. Liz

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