Iritis Member Introductions

#5

Hi-

I am the parent of a wonderful daughter who was diagnosed with iritis almost 2 years ago. I was seekinginformation about this condition because I had never heard of it and found not many people had.

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#6

I’ve had chronic iritis/uvietis in my right eye since 1984. I’d like to find out if there are any new treatments.

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#7

I have had…and currently have raging iritis. It is a hard disease for others to understand. The frustration and pain is unique.

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#8

I suffered with iritis for ten years I no longer have the flare ups as I found my cause, my right eye is still heavily scarred from it though,

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#9

I am a mom and grandmother and so far my kids and grandchild have not had problems, but neither did I until I was in my 40’s. I am HLA-B27 positive and do not know which parent is positive. I also do not know if either of my children are positive.

I am in the education field and need the use of my eyes!!!

I first had an Iritis attack in 1999 while at work. I had a huge water pocket appear on my eye and pain like I couldn’t believe. In 2000, I seemed to have the attacks more than not having them. I was almost constantly using the pred forte drops and had to take steroid pills a couple of times (two packs straight through before relief) They were threatening injections in the eye.

A couple of years later, I saw information from some discussion groups and learned about people who seemed to have milk and milk products seem to trigger the attacks. I started avoiding milk and now have an occasional attack, but it usually always happens when I decided that something such as ice cream is worth the risk. I also eat cherries, celery and other anti inflammatory foods to try to avoid the attacks (especially when I get that taletell ache in the eyebrow bone). I have been attack free for 1 year and 1 month now, though I have had several times that I either had the eyebrow thing or the eye start turning red or getting the ‘blister’ on it. I usually hit the cherries and treat milk like poison and get it cleared up without the meds. Med free for over a year is great for me!!! It is well worth the sacrifice of the milk and milk products. I swear by it and though I get my weak moments and eat ice cream, I use soy for all my other milk needs (even yogurt) and often get the frozen soy bars instead of ice cream.

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#10

I have had Iritis for over a year now. I’m afraid that I’ll never see the end of this, so I’d like to learn about everything I can.

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#11

MY NAME IS REGINA AND I HAVE HAD THIS CONDITION FOR THE PAST 2YRS AND I REALLY DON’T KNOW WHAT TO DO IT IS GETTING MORE RECURRENT AND NOBODY SEEMS TO KNOW WHAT IS CAUSING IT, I’VE BEEN TO THE RHEUMATOLOGIST AND HE SAYS THE ONLY THING HE CAN TELL ME IS THAT I HAVE PSORISIS ON MY SCALP AND THAT IS WHAT IS THE CAUSE BEEN TO DERMATOLOGIST AND HE TREATED THAT AND HERE WE ARE AGAIN

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#12

I currently have Iritis for the first time. How do I cope with this horrible pain. I can’t go anywhere, I can’t even look at this computer screen with my iritis eye.

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#13

Good afternoon. My name is Mary, age 59 female, and I was just diagnosed w/Iritis yesterday and decided to research the condition beyond what my doctor told me which was primarily just the name. I did a search on the Dogpile search engine and looked around, naturally misspelling the word.
I almost immediately (sp) ran into the word autoimmune and that’s what I’m wondering about also. Basically, I’m trying to figure how to combat it other than the Prednisone that I was prescribed. Looks like I may get some answers here, thxs in advance and any nfo appreciated.

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#14

curious as to how other people are coping with this condition. preparing & trying to learn from the group

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#15

I am a 39 year old registered nurse who has had this diagnosis for 4 years. I’ve had the pleasure of a flare up once or twice a year until 12/05. I now have it in both eyes and have just had to have steroids injected into both eyes.
I am looking for any info - Has anyone been to the Mayo? My iritis is idiopathic - going to a “new doctor” for second visit on the 26th.

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#16

I’ve had Iritis in my left eye about 5 years now. I’m getting used to seeing with only one eye. My left eye is like looking through water with black strings floating in it.

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#17

Hi!

I am a 28 yr old who has been dealing with Iritis since I was 16. Iritis has basically caused me to be blind in my left eye. I would love to connect with young people with this disease! I often feel pretty lonely since I don’t know anyone who has Iritis. Anyone in San Francisco?!

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#18

My daughter had iritis 6 years ago and was just diagnosed with it again today.

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#19

My name is Melanie and my iritis onset in Dec. 2000. I have other autoimmune diseases as well. I’ve been on Lotemax drops, PredForte drops, oral NSAIDs and TobraDex gel. I have flares fairly often now, but had fewer when I was taking systemic medicine for my rheumatoid arthritis. I’ve been off of those meds for a few years due to pregnancy and breastfeeding and have been on drops every day instead. Hormonal changes are a big trigger for me. My eyes seem to be the most sensitive, typically flaring before my joints are GI system does. I also avoid milk as someone else suggested. I’m interested in other treatment options since I’ve been on drops for going on 8 years.

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#20

Hello

I joined the group at yahoo a year or 3 ago. I obviously havnt spent much time there. Have had an awful lot going on. I care for my husband. He had a Major Heart Attack and Massive stroke two years ago this coming may. He is doing well at this time, actually much better than we ever expected him to.

I am currently suffering my 3rd episode of iritis. It sure hurts! Anyway. I went to the group site for some advice and comoradery only to discover you moved here. I havnt had much of a chance to loook around yet, but I will…

The first time i had iritis really took me by surprise! I had spent the day at a photo album work shop and had been cutting and clipping photos and pictures when I started feeling like something was in my eye. By about 1 a.m. I was hurting so bad, I woke up my husband ahd had him take me to the ER. Had a follow up visit with a pedatric opthomoligist. Dont know why they sent me to a kid Dr. but it was ok… The second time it happened was last may. My husband was unable to drive at that time and we were on a vacation trip. He is retired now since the stroke so we had an open end vacation. After visiting Carls Bad Cavern I started feeling like my eye was dring out. Thought maybe because we were enjoying the weather with the windows and sunroof open. The next morning when I woke up I knew I had a problem. After a trip to the ER at Alamagordo NM, we made it a long layover there until My eye healed up enough for me to continue driving. We really wanted to see white sands nat park. Lucky for me it was very cloudy when we went there. Ok, back to the iritis… did a follow up with my family practice Dr, who sent me to an opthomologist. He stressed to me that if itever happens again, to get to the opthomologist first so he can run blood work and such on me.

Since that time, I have found one that I really like and have seen him twice for regular eye exams. I just saw him wednesday last week and he said no signs of iritis. Looking good. but he stressed again how important it is for me to get to him next time it happens. For some reason, this always happens to me on a weekend. Sunday I called his office and got an answering service. I was called back by an intern and told to meet her at the office. She was on call and came in, unlocked the place just for me. She confirmed it was definately iritis. Gave me some steroid drops and drops to dilate the eye. The next day (yesterday) I phoned in to the Dr office. I actually called 3 times, and eventually got through to his secretary. She said he would be calling me back… Its my understanding that he would be ordering some blood work up and test as soon as the iritis begins. Well, I am concerned now because I didnt hear from him yet. I am doing the steroid drops every hour and the dilation 4 times a day. I dont know how long to continue these or when to taper down the steroid. Im going to call his office again today.

I wonder if this can be triggered by stress? seems everything can be. I dont lke the list of possible causes for it. And I am trying not to worry, but you have to admidt, the list of things than cause it is a long ugly list.

Thats my introduction and my condition right now.

BabsZ

BabsZ aka Barbara

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#21

Hi,

I’ve had iritis/uvietis for 23 years mostly kept in check by drops etc. My Doc has always had me on a certain drop schedule until he sees me and decides it’s ok to step it down. Some people get iritis and it goes away forever and some people like me have it and it stays.

I only have it in one eye and contrary to what you are probably reading it’s associated with no underlying disease, idiopathic. Get a really good pair of sunglasses which keep out all UV rays and cover your eyes as completely as possible. Wind and light can make it worse. Keep yourself well rested and hopefully your Doc will give you drops to use on your own when you flare up until you can see him. No blood test has ever shown anything on me no matter if I’m having a flare up or not so you can kinda relax on that score. It’s not so bad.

Sue in CT

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#22

I received a call from my Dr.s Receptionist today. They set me up with an appointment with another opthomoligist that has more of a specielty with iritis/uvitis. My appt is March 4th. Thats 2 weeks out. Hope the drops I am using last that long. Not sure how I feel about this. I expected a little quicker attention. But I suppose I cant die from it. can I???

BabsZ

The next day (yesterday) I phoned in to the Dr office. I actually called 3 times, and eventually got through to his secretary. She said he would be calling me back… Its my understanding that he would be ordering some blood work up and test as soon as the iritis begins. Well, I am concerned now because I didnt hear from him yet. I am doing the steroid drops every hour and the dilation 4 times a day. I dont know how long to continue these or when to taper down the steroid. Im going to call his office again today.

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#23

I would make sure your drops last, if they don’t call your old Doc for a refill until you can gert to new Doc. Kind of glad you are going to a new Doctor from the sounds of it. Probably won’t be any problems but if you get a sudden migraine or really bad headache call your new Doctor so they can check the pressure in your eye.

Opthamologists around here can be a bit of a wait. It’ll probably just give your eye time to calm down.

Sue

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pinned #25
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