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Asked to be in dry eye study. Opinions?

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  • Asked to be in dry eye study. Opinions?

    My doctors office called me today and I guess they want me to participate in their dry eye study. They are going to be using an eye drop that is often used after cataract surgery (I can't seem to remember the name). It's an anti-inflammatory eye drop and they are reducing the dosage i guess. They promise this will not damage my eyes any further but I am still a little scared because I do not like putting all this crap in my eyes but I decided to go ahead and participate.

    They asked for me to go in on May 17th so it is not for awhile but if you all would like I will let you know how it goes as long as they don't ask me to keep this just between me an them.

    If anyone knows questions I should be asking the day I go in or just advice to calm the nerves because I am a little nervous about being a guinea pig but if it helps in the advancement of dry eye understanding I guess it's worth a shot.

  • #2
    Must be Ista's low-dose bromfenac (called Remura now I think). Sounds like an interesting opportunity! Keep us posted
    Rebecca Petris
    The Dry Eye Foundation
    dryeyefoundation.org
    800-484-0244

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    • #3
      I went in for the dry eye study and the drug they are testing is Xibrom. It does have bromfenac in it and they are reducing it to .6% and .3% and a placebo. The weird part is last year when I first got dry eye my doctor was shocked because I was 22 and my left eye produced half the normal tears and my right eye was bone dry which were his words. It was a chronic thing and I've never felt so much pain before in my life. A year later I went for this study and I passed the question and answer part. Next I had to do a staining to make sure my eyes were dry enough to be in the study. His assistant put the drop in my eye multiple times because to her amazement I wasn't staining.....which means my eyes were not dry. Doctor checks them with his scope and tells me I scored a 0 in both and that I am not eligible. My doctor likes to constantly tell me dry eye doesn't get better. How the hell is this explained then? I'm not complaining that my eyes are getting better but he keeps telling me they do not get better. I went from severe dry eye to barely anything. I am so confused.....I have noticed taking sudafed actually helps with my dry eye...is there a connection between sinuses and dry eye?

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      • #4
        I am going in for a dry eye study on Jun 3rd. I have no fears, as I am in a lot of pain and would try just about anything at this point. I am only worried about getting the placebo. I will let you know.

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        • #5
          please don't believe a doctor who tells you that dry eye does not get better. I was a 0 in one eye and a 1 in the other eye. I am now a 3 and the difference is unbelievable. I might be on drops for the rest of my life but I am not suffering any more

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          • #6
            Originally posted by MBC View Post
            please don't believe a doctor who tells you that dry eye does not get better. I was a 0 in one eye and a 1 in the other eye. I am now a 3 and the difference is unbelievable. I might be on drops for the rest of my life but I am not suffering any more
            Exactly how I'm feeling. I use to be on drops 15 times a day. i take 2-3 systane balance drops a day now. Sometimes just out of routine and not because my eyes are bad. The weird part for me is the sudafed. Today my eyes were bad again, took some sudafed and my eyes feel great, tired from lack of sleep but not burning, itching, basically not dry.

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            • #7
              I participated in that study, but I dropped out because I wasn't getting any better and your limited on the usage of OTC drops. They only let us use refresh and it wasn't perservative free. My eyes actually got worse. I never found out of I had the placebo or not it might actually help. You do have to devote a lot of time to the appointments, you have to go at certain times and call into a 800 number to confirm you've used the medication if you forget you have to make sure you do it the next day or they might kick you out of the study. If you have the time and energy to follow the guidlines it's worth a shot..for me I was at the point where I couldn't waste time because I wasn't getting better.

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              • #8
                Originally posted by Filazafer View Post
                I am going in for a dry eye study on Jun 3rd. I have no fears, as I am in a lot of pain and would try just about anything at this point. I am only worried about getting the placebo. I will let you know.
                I went for the study, but I didn't pass all the tests. The study is for Bromday. My eyes didn't show enough staining. She said "Maybe you are just having a good day." Actually, I was having a pretty good day, probably because the weather was better. The whole study is so specific, your eyes can't be too dry either. They gave me a survey and one of the questions was "how gritty do your eyes feel on a scale of 0-4?" My eyes don't hardly ever feel gritty, they just burn. I was trying to decide between a 0 or 1, but the nurse said if you don't answer at least a 2, you are out of the study. So I just answered 2 on every symptom I didn't have. Pretty stupid if you ask me. But, the doc gave me a sample of the medicine anyway to see if anything happens. So far things are about the same.

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