Share your experience, tell me what you did different, help us help each other by talking about it.
VKH. Unlike other illness that are funded eg diabetis, hypertension, stroke.... VKH being so rare does not have much education or actual treatment regimen in place for us to follow. So,.lets help us help each other by sharing your experience remedies and something the worked for you which might help us fight back VKH.
Read your story and have a similar version of my own. VKH was and is still being considered as a diagnosis of a health challenge I have been facing since November 2012. Want to make sure you are still active before posting my story. Will be glad to share my experience over the last year with VKH. I am also from San Antonio.
Sorry for replying late, I had a busy week. Yes please. I had lots of emails from Asia to Europe and parts of the US and I was encouraging them to share it with this site to let others know how they battled this disease. I actually had another flare up few days ago and end up getting a steroid shot in my right eye to calm it down. My triggers are mountain cedar and molds in the air. I was actually doing great for a year using my goggle/eyeglass until few day before I was washing my car outside and to off my eyeglasses thinking it was OK since it was a shiny weather here in SA Town. My mistake. My eye started bleeding last Friday and now its full blown just on the right eye. The shot was my best alternative since I down want to deal with taking prednisone and the side effects of it (eg. #moonface and #weight gain) also I noticed it is also exacerbated due to the fact that my stress level is high due to my line of work and going to school lately. Anyway, please do share some things that helped you and eventually us defeat this disease. by the way the prednisone eye drops is also my best alternativeon not dealing with the systemic steroid. before I end this post I would like to also share another signs and symptoms VKH does during my flare up which I notice with some fellow VKH survivor. I would have this ringing in my ears which is annoying (tennitus) and a flu like symptoms which I would also mistook as my blood pressure being high. I hope this help you all. For the meantime good luck and God Bless.
I have VKH syndrome
I'm on the mend. Thank you for sharing your truly touching story.
I love my doctors
I had VKH - photophobic and completely lost my eyesight. It came on after a lot of work stress. I was referred around a couple of local opthalmologists who didn't know what to do with me, before I was referred to the hospital outpatient clinic and then admitted and treated with strong steroids. I also had issues with autoimmune prescriptions, which left me with ongoing cold urticaria. But my eyesight came back quickly with the fast treatment. I have slight macular damage and an increased risk of macular degeneration and cataracts as I get older. My opthalmic surgeon told me I was very lucky - back to good health within 6 months. He had another patient who had ongoing treatment over a few years. I left the stressful job and I think that really helped.
I have lived with VKH since 2002. I was diagnosed at Dartmouth -Hitchcock and treated both at John Hopkins Wilmer eye institute and UCLA. I was diagnosed at age 23 and my initial flare made me completely blind. I was blind for 3 months 2 weeks and 4 days. The doctors recovered my sight about 80% with significant damage to my retina. I was treated with 80 mg of prednisone for 3 years and cyclosporine 2 years to calm my flares. I was quite for about 4 years and had a lite flare. I have now 2014 started with prednisone and methotrexate regiment to control a new flare. I take it by injection because of my GI issues. So my experience is different then your. But I was wondering. How you are doing today?
I was given a shot. Yes, a shot in my eye to calm this flare ups for months and yes it worked but it does hurt but not much. its works for months, avoiding those prednisone eye drops or the systemic steroid which affects your whole body. I hope you could also share what worked with you by posting your experience. What your diet that works, what you do and what activities you do to prevent this flare ups. Oh by the way, I wear a prescription goggles. not like the basketball players use but the ones similar to the laboratory goggles although more of a daily look,
it filters mold, cerdar, ragweed etc... from entering your eyes making you flare up. Also, I noticed when housekeeping buffs you floor at work the combination of the chemicals and whatever the buffer throws in the air would also trigger my flare ups despite the goggles. I guess the chemicals are just too harsh to even be filtered.
Again dont hesitate to share your experience. Thanks and god bless.
If I can be of any help to anyone with VKH and how my daughters vision was saved please let me know.My daughter had VKH at the age of 8 and lost her vision entirely at that time; presently she is 26 and has no vision problems. She had a 100% recovery and was treated at the Harkness Eye Institute Columbia Presbyterian Hospital NYC
Thanks Nurse Ed for this blog! My nephew who is 5 years old has recently been diagnosed with VKH. Carolyn, it would be wonderful if you could share your experience with VKH in children
I recently got diagnosed with VKH and was wondering how your daughter is doing and what can you recommend?
Thank you so much for creating this site. It is so helpful to know that I am not alone in this and I so appreciate a forum to discuss our stories, treatment, etc. I was diagnosed with VKH 9 years ago. I presented with acute vision loss after a tonsillectomy. Within three weeks I had significant vision loss and after seeing three different doctors was diagnosed and started on 100 mg of prednisone. Let's just say , it did not help with the search for a wedding dress and I considered calling off my wedding , as I did want my future husband to be left with a blind bride. I had my pity party and soon realized i might be a fat bride with a moonface, but I was able to see and that is what mattered. I remained on steroids for about 13 months and regained my vision despite a small blind spot in my left eye. My flare ups remained dormant until about two years ago. A UTI caused a flare up and a recent run of the flu has caused the start of another flare. Having two children under five does not help my situation, as they bring home every possible illness from school.
I had no idea about possible seasonal allergies causing flare ups, nor have I ever heard about the use of goggles to protect your eyes. I appreciate heraring about other patients triggers and the treatments they are receiving. Are most of you being followed by a rheumatologist and Opthalmologist? I have yet to see a rheumatologist, but am starting to consider it.
Last, I was diagnosed with VKH by Dr. Narsing Rao at USC Medical Center. He is amazing and I consider him my special angel. I don't know what I would do without him.
Thanks again for starting this site and I wish you all the best.
I was blind for several months, was on all the usual meds, my doc wanted to send me to U of WA hospital, my son was just a baby at the time, was tired of the bloat, just tired of it all period. They would not let me take my son, told my doc, you will have to do something else, I don't want to do this no more. I went on chemo via IV and that pretty much brought me some recovery, though my left eye is quite damaged. And yes, bad night vision. It has been several years now, I can recall one flare up, but I do get yearly check ups.
Im 27 years of and from India.Ive been diagnosed with VKH on tuesday this week. the flare up started with a reaction to tropicamide dialation drops when i went for a regular check up at the optometrist's. it's the 3rd day today and im already on 120mg of steroids. yest i read about the side effects of and went on a full regime of exercises cos i so wanted these steroids to metabolise andd get to work. if it was a case of the happy hi or not, i dont know. today morning i wake up and realise that i cant even see my face in the mirror nor can i tell the colour of the nail paint im wearing on my foot with my left eye. im frightened and already feeling devastated. despite of that i have come to work today , cos staying home is going to make me feel so miserable ryt? it's a battle i have to fight and i have to start right away. i wanted to hear from someone to tell me that life isnt over for me just yet there is so much left to see, and then... i finally came across your blog. ill be here with you in spirit and words to wish for each of your's recovery. please stand by me and suggest me the right thing to do from your experiences. I hope we all heal soon. take care.
Thank you for sharing your story I don't feel as lonely in my journey. Im from Chicago I just wish vkh had a support group in my area. Others I can speak with that understands the rollercoaster of this disease.
We have 2 girls in the family,13 years and 26 years,
They had been diagnosed as VKH And they had cortisone which cause more damage to their retina, then doctors changed the diagnos to a CSR which has no treatments.
The little girl now totally blind and the elder can use only 50% of the left eye, the doctors said we have just to wait.
Is there anyone has similar case? We need to get a quick way to get rid of the retina de attach
Thank all of you for being so strong and i love all of your for your strength. I live in California and if there is anyone who knows of a really good neurologist retinologist or just a doctor who has extensive background in Vogt Koyanagi-Harada please call me 424-356-4811 Love you all .
Nurse Ed San Antonio,Texas.
Dealing With Side Effects