VKH Related Uveitis

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aetna Registered User (7/28/08 10:10 pm)	VKH Related Uveitis Good day. I'm new to this group and want to share with you what I've been going through the past year, maybe I can get "some" guidance or could be directed to a "VKH Syndrome" support group/forum. A year ago; July 2007 to be more precise I was rushed to the hospital with excruciating eyes pain, eye redness and unbearably sensitive to light. I was diagnosed with acute Uveitis and treated with eye drops; including cortisone eye drops; to be administered on an hourly basis, then decrease gradually. Treatment went for few weeks until was told that it was gone and limit the eye drops to twice a day. Once cortisone was reduced the Uveitis came even stronger creating an acute Glaucoma; which I had to undergo laser surgery on both eyes. This went on and off is the same direction for few month, referred to another Ophthalmologist specialized with Uveitis. I was precribed Oral cortisone (50mg to start) and Eye drops as well. Every time I reduced the Cortisone pills as well as the eye drops, Uveitis came back. I was hospitalized for 10 days. Blood tests, MRIs, Scans, Lumbar Punctureand (the whole 9 yard). The Ophthalmologist and Neurologists "suspected" all my symptoms lead to "VKH Syndrome" (Voigt Koyanagi-Harad): "Vogt-Koyanagi-Harada disease is a systemic inflammatory disorder that results from an autoimmune reaction against melanocytes. In most cases of Vogt-Koyanagi-Harada disease, good vision is regained after the inflammation subsides after appropriate treatment, regardless of the severity of the retinal pigment epithelial (RPE) changes. Electrophysiological studies have demonstrated that the dysfunction of the outer retinal layer is severe in Vogt-Koyanagi-Harada disease, whereas dysfunction of the inner retinal layer is mild and reversible. Patients with Vogt-Koyanagi-Harada disease have high retinal detachments involving the macula, resulting in severe visual loss in the acute stage. Unfortunately, there are no studies on the recovery of macular function during the convalescent stage of Vogt-Koyanagi-Harada disease" I was prescribed with a brand of Immuno-Supressant. Increased the dosage after "another" relapse. Changed medication due to the fact that every time I reduced the Cortisone there was another relapse. The new medication almost killed me, high-blood pressure, swelling (gained 10lbs in 3 days) due to water retention. Now I'm waiting for "another" medication ... another try. At this point, I'm almost at the END of my rope. I've been struggling with this for An ENTIRE YEAR. Not to mention the side effects of all Cortisone; chronic fatigue, sleepless nights, neck pain, temporary loss of sight and hearing I still have to go on with my life and work. So I just want to know if this is common to ALL the VKH Syndrome patients. Is there anything they did not see.... Is there something else we should look ? Have they misdiagnosed me ? What should I do ? Thank you all for your understanding and patience in reading my first "long" Post ! C
aetna Registered User (7/28/08 10:32 pm)	Re: VKH Related Uveitis P.S. I forgot to mention the following: I live in Montreal- Canada. The prescription medications I'm on right now are the following: 1- Prednisone (Pills) now reduced to 12mg/day (this is my borderline before my vision drops again, 2- Prednisolone 1% : One drop in each eye 3 times a day. 3- Cell-Cept 3 pills twice a day (morning & night) 4- Maxidex 0.1% 1Mg : Ointment to use "only" at night before sleeping Not Used at this moment, only when I'm at the beginning of my relapse for few weeks until it gets back under control, 5- NEORAL 1 Pill Twice a Day (Stopped it) it drove my blood pressure 176/101; which I had to rush to the hospital because It was going up by the hour, 6- HYDROCHLOR 12.5 MG.(for my High Blood Pressure) until it gets back under control... That's it for now.. C
Webmaster Administrator (7/28/08 10:33 pm)	Re: VKH Related Uveitis Hi C. Welcome to our community. We used to have a VKH forum on this discussion board but there were so few posts that, when the board was reorganized, it wasn't retained. I would suggest that you start a thread in the SUPPORT section, title is VKH, and others will spot it and reply. Where do you hail from? You might also want to consider posting your question on the ask Dr. Foster Forum. Use this link. Your registration for this group should work there as well. Liz
aetna Registered User (7/28/08 10:43 pm)	Re: VKH Related Uveitis Thanks Liz for your quick response. I have just added few additional information regarding where I'm coming from and the prescription medications I'm on. I will try to start ma thread but where in the "support" area. I won't mind starting it. I will take your advice as well and go to the Dr. Foster Forum. Thanks again. C for (Claude)
Meseben Registered User (8/19/08 10:59 pm)	VKH Related Uveitis Hello C, Welcome to the world of VKH!! I was first diagnoised in the fall of 2004 with my first episode in the spring of that year. I also have more of the Harada's part of the disease. I mainly took prednisone up to 80mg but now I haven't had any of that for over a year. I have totally realigned my life and became very health conscious and have been able to maintain on 1500 mg of cellcept every day - use to be 3000 mg. It was very rough there for awhile going up and then down with similar health issues. The fatigue and muscle weakness were hard for me as I was very active and a workaholic so I have had to taper that also. I also have diabetes which I control with diet and due to the high doses of prednisone developed barretes esphoghaus-my cell lining in my esphoghaus have changed due to the acid content and I have a greater chance of cancer now. I have to get scoped every 6 mos. But I lost a lot of weight which for me the prednisone seemed to help which is different than most. I think the best thing I did was to learn everything I could about the disease and I have a wonderful retina specialist that is forward thinking and has been to seminars by Dr. Foster which is good. My uveitis specialist was not my cup of tea so I only go to my retina specialist. I think the hardest part is knowing more about the disease than my regular doctors and being treated like an oddity and educating them. But now they know that I am very aware of the warning signs of when I am going to flare so they listen and the retina specialist is very good at that and I can usually get in the same day. My regular doctors know that if I am getting sick that they don't mess around in treating me to get well so that my immune system does not get out of whack. It has been hard but you need to be persistent with your care and ask a lot of questions to get the answers you seek. I haven't posted in a very long time since not too many have VKH so it was nice to talk with you. Meseben

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