We do have members with VKK but they haven't posted in some time. hopefully one of them will stop bye and see your note, in the meantime, what stage are you in? posterior uveitis requiring chemotherapy to control or have you progressed to anterior smolder of iritis?
Re: vkh
Hi. I'm currently on 5 mg prednisone (from 80 mg back in July) and started taking Cellcept (250mgx2 daily)about 3 months ago. At this point my eyes have been "quiet" for a few months, and when I see the Opthamologist in March, depending on how my eyes are doing, he will taper my prednisone more. My current challenge with this disease is dealing with the aftereffects of my bout with aseptic meningitis (July 2007) -- the dizziness, headaches and drowsiness. Also, my hair has been thinning. I know alopecia is part of the disease, but I wonder if the drugs are contributing to the hair loss. I have so many questions, but very little information out there -- very little data.
the article above discusses aspects of VKH to include hari loss (alopecia) and other things like poliosis (white spots on skin, neurological manifestations etc seen in early stages of the disease,
please join in conversation in the General discussion forum or the learning about OID forum that I moderate here, post a new question and then we can get a thread going.
Re: vkh
Hi
I´m form Chile and I was diagnosed on Sep 2007. I startaed with 100 mg/day prednisone and now I'm in 40 mg/ day (actually I was in 5mg but I started to lose vision again so ...)
I read something about chemotherapy, what do you mean? Because is the fors time that I heard that like part of a treatment.
Thanks
Re: vkh
Hi Gantunez,
The word "chemotherapy" is kinda scary -- you immediately think cancer -- I think the chemotherapy used to treat uveitis is a different kind of chemotherapy -- i think. The terms most commonly associated with this kind of treatment are "immunosuppressants","2nd agent" and "antimetabolite". Usually, immunosuppressants are prescribed in addition to steroids (prednisone)so you are able to lower your steroid dose. I'm taking 250mg. of Cellcept twice a day in addition to the 5 mgs of steroids. My doctor told me it's important to not taper your steroids too quickly. He said I should be down to 5 mgs at 6 months and a 2nd agent (immunosuppressant) is usally needed to taper. You might want to check with your doctor.
Welcome Gantunez
Welcome to our site. Our goal is to relay information which may improve your disease. Please take the time to investigate this site and learn about immunmodulation therapy (IMT). This step ladder approach to treatment is a very effective way, in many cases, to control inflammation of the eye AND reduce and stop the need for steroid drops/medications. Of course, there are always challenges in the implementation and final direction of the treatment plan. However, under the guidance of an ophthalmologist trained and specializing in Uveitis related eye problems, success is possible.
Please access the Learning site as well as the Shaing and Coping sites to ask questions and share in your experiences.
Re: Welcome Gantunez
The closest 'specialist' to you is Dr Emilio Dodds in Argentina if I recall correctly. I don't know his experience with VKH however. a few years ago we had a lady in her 20's from Argentina who was a patient of his and who then moved to Spain. We had another lady who posted from time to time who was a translator from spanish to English who's husband worked for a Major Oil Company who was in Brazil for awhile. I have lost their emails or I would put you in touch with them.
all medications are 'chemotherapy' bye the way. all drugs have side effects and 'risks' associated with them too. many over the counter drugs can cause severe damage to internal organs too in some people so one needs to have a medical doctor monitoring these internal organs for potential damage. the drugs we are talking about effect the immune system and over time retrain it to stop attacking our eyes by mistake. the main thing with VKH is to attack the beast strongly with these agents while it is in the back of the eye which is the first stage of VKH before it does allot of damage.
Just checking in to see how your world is with VKH. I have had this since 2004 so my life has definitely changed but not all bad has come of it.
I am on 1500 mg of CellCept at present - started with 3000 mg - and no flares for over a year. Started out with 80 mg of prednisone and tried Meth. for a period but it did not agree with me so the CellCept has done wonders.
Steriods by themselves aren't the answer I have found. It wasn't until I was on the Cellcept that my eyes quieted down for long periods of time. I just have to watch my stress level and rest when needed which is hard for me to do.
Hope all goes well and you get the care that you need. I know that is hard to find sometimes. I had at one point seven doctors that I visited with this disease but I am down to two now. Whew! Be persistent and educate yourself since not many doctors know about this disease.
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