Hi, Kelly here, nice to meet you.

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Kelly682
Posts: 2
Joined: Wed Jun 09, 2010 8:28 am

Hi, Kelly here, nice to meet you.

Post by Kelly682 »

Hello, I'm new to this site, although I probably should of joined a long time ago! I'm 28 from NH. I got my first flare up from Uveitis when I was 18. I woke up in the middle of the night with severe eye pain. I had no idea what happened. My parents took me to the ER, they had no idea what it was. The next day I remember seeing my eye doctor, he didn't know either. I was sent to his colleague, who didn't know what it was, but treated me anyway. It went away and I was so grateful! I was a little irritated that I couldn't wear my contacts anymore. I had been wearing contacts since I was 12. I remember being so embarrassed because I had to wear glasses again. Little did I know then, that glasses would be part of my face forever!

A few years passed and no flare ups. I still wasn't diagnosed with anything. I just thought it was a random eye infection. A few years ago, 2006 I believe I started back with eye pain. I went back to my eye doctor to find out his colleague ( the man who treated me before, left the office to start his own practice). Well I hunted him down. He helped me once, he can do it again! I found him and he said, I can't help you. I was like, are you serious? You did it once, do it again, please! He referred me to Mass Eye Associates, which is where I go to get treated. My opthamologist is great. Anyway, he sent me for a blood test and I am HLA B27 positive. He told me all of the different diseases I might get. Which honestly freaked me out. In october 2006 was the worst flare up I've ever had. I had to get a shot in my eye. I would not wish that on anyone! Freaked me out!!! Ever since then, I've had Chronic Uveitis. It never goes away.

Its been 4 years and I've had maybe 2 bad flare ups a year. I don't know how to get rid of it. My opthamologist is at the point where he feels comfortable letting me put the drops in my eye without being seen. Granite I do see him about twice a year because its been so bad. I also do call him if the drops don't work, then he puts me on prednisone and the dredded shot if necessary. I only have it in my left eye. I can feel it all the time. Its at the point where my co-workers and family members will ask me "Kel, your eye is red, is it bothering you?" Most of the time I try to ignore it. I am a pro at putting drops in my eyes. :lol: I haven't seen a connection with being stressed and having a flare up. Nor have I seen a connection with my flare ups and allergies. It almost seems like I get them in the spring and fall months though...

For some reason I foresee myself getting most of the diseases with HLA B27. Although I hope I don't. I wonder if HLA B27 is hereditary. My parents don't have eye problems, well besides my mother who wears glasses. No eye infections/problems though. My sister has perfect vision and just eye allergies. I guess I'm the odd one out of the bunch.

Anyway, I thought I'd introduce myself and tell my story. Don't know if I'll ever take advantage of this site, but I hope someday there is a complete cure. My poor eye can't take anymore drops!! 8)
Mike Bartolatz
Posts: 6595
Joined: Fri Feb 06, 2004 9:58 pm

Re: Hi, Kelly here, nice to meet you.

Post by Mike Bartolatz »

Kelly,
Please make an appointment with Dr C Stephen Foster in Cambridge, MA. he is the top ocular immunologist in teh World and you are so very close to him. I know people from NH who travel to see him. (people from california, washington, Israel. africa and Europe too)
adding an NSAID such as Celebrex works in about 70% of HLA B27 positive uveitis patients.
you would know in about six months if it will work for you and then you would stay on it for TWO years then half the oral dose for six months and then stop. if it comes back then DMARD drugs such as Methotrexate would be used alone or in combination with other classes of drugs. the goal is OFF ALL STEROIDS without inflammation. Durable remission is possible before long term consequences of uveitis and steroids impact your vision permantly. PLEASE go to http://www.uveitis.org and contact Dr Foster through the site. I had only steroid treatment and I am permanently disabled from oa combination of low vision and other health problems. today Mary is Blind from undertreatment of uveitis.

wish you the very best,
Mike Bartolatz

PS> when you call Dr Foster's office, tell them I sent you and you will get an expedited appointment. Make sure the appointment is with DR Foster as he travels extensively lecturing around the World. if you have ANY difficulty getting in TELL ME and I'll send Dr Foster a private email as he is a friend of mine. msb
Mike Bartolatz
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