Discussions By Condition: Medical Stories

??Struggling with VKH??

Posted In: Medical Stories 1 Replies
  • Posted By: A.Sedillo
  • November 10, 2008
  • 08:00 PM

I am a 35 year old single mother of three. In 1996 I was getting frequent headaches everyday. I wasn't able to get out of bed, started losing my hair, had a very hard time doing anything, legally blind, and started getting very, very, depressed. I was unable to care for my two children at the time, so i moved back in with my mother. Once I lost my vision, i was sent Opthalogist. They took a series of pictures of my eyes. Right at that moment was told i had VKH.

I was put on very high doses of Prednisone. Being on Prednisine brought on more symptoms. It is the most terrible drug to be on. Being on prednisone, I gained 60 pounds, grew a lot of facial hair, was always hungry, and would always be restless. I then went to a Rheumatologist and was put on a medication called cyclosporin. I pleaded to the doctor for her to put me on this medication.

Once on this treatment, i was able to function again. I had two jobs. I was okay for two years. I still got sick here and there but was still able to manage. My husband at the time did not believe that I was sick. Still to this day you can look at me at not believe that I'm sick. I started getting flare ups that got out of control and was put on Methotrexate. That has been best drug I have been on that has had the least amount of side effects.

In 2002, i got pregnant and a lot of my symptoms subsided. Except the headaches. Headaches have been the worst problem for me. I tried going back to work twice and was able to hold both jobs for six months. I havn't work since 2004. I'm in pain and tired all the time.

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  • I am a 35 year old single mother of three. In 1996 I was getting frequent headaches everyday. I wasn't able to get out of bed, started losing my hair, had a very hard time doing anything, legally blind, and started getting very, very, depressed. I was unable to care for my two children at the time, so i moved back in with my mother. Once I lost my vision, i was sent Opthalogist. They took a series of pictures of my eyes. Right at that moment was told i had VKH. I was put on very high doses of Prednisone. Being on Prednisine brought on more symptoms. It is the most terrible drug to be on. Being on prednisone, I gained 60 pounds, grew a lot of facial hair, was always hungry, and would always be restless. I then went to a Rheumatologist and was put on a medication called cyclosporin. I pleaded to the doctor for her to put me on this medication. Once on this treatment, i was able to function again. I had two jobs. I was okay for two years. I still got sick here and there but was still able to manage. My husband at the time did not believe that I was sick. Still to this day you can look at me at not believe that I'm sick. I started getting flare ups that got out of control and was put on Methotrexate. That has been best drug I have been on that has had the least amount of side effects. In 2002, i got pregnant and a lot of my symptoms subsided. Except the headaches. Headaches have been the worst problem for me. I tried going back to work twice and was able to hold both jobs for six months. I havn't work since 2004. I'm in pain and tired all the time.I know this post is very old, but wanted to talk more about your current condition. I was diagnosed with VKH in 2/2006. I have been on a steroid regimen for over 3 years now. I am currently on a cocktail of Methotrexate and Prednisone, and a host of other meds to take care of the MANY side effects of long term steroid use. I'm not a registered member, but can be emailed at l_tarver@hotmail.com. Thanks.
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