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  • Good news, but now what? (long!)

    Ok, This is really good news, and I am really pleased about this: after a paper cut in my eye in 2007, and a couple of years of RCEs, I have managed nearly 14 months without an erosion!

    My optician and two ophthalmologists say that I don't have map-dot fingerprint dystrophy, although the two ophthalmologists are mostly basing that on the fact that I have only had erosions in one eye, and did a very cursory exam. The optician, bless him, did a really thorough exam, and said he could not see any signs of any dystrophy.

    In September 2009, after a couple of painful erosions (following 10.5 months without one) my ophthalmologist suggested that I use Lacrilube at night to see if that would help. I had been very resistant, because I hate Lacrilube, it irritates my eyes, and I don't think greasy ointments are a good idea generally. But I gave it a try with Simple eye ointment instead, still greasy, but a slightly different composition than Lacrilube, and it worked.

    For 14 months I have been applying Simple eye ointment every night at bedtime, then setting my alarm to wake me after 4 hours to reapply. (I use Systane drops at bedtime, about 10-15 minutes before the ointment. I very rarely need drops during the day any more, but if I do, I use Systane then, too.) When my alarm goes off, my eyes feel dry and sticky, so it feels good to add more drops and more ointment. So far, no more RCEs, for which I am extremely grateful!!

    Prior to this, I used Dwelle, or Clinitas Ultra 3 and Genteal gel, and set my alarm for 2-3 hours to reapply. I haven't had an uninterrupted night's sleep since December 2007!

    So now, I'm wondering if I can modify my routine somewhat, and get away from the greasy ointment and middle-of-the-night alarm. I would be thrilled beyond words to sleep all night without getting up to add more ointment/gel/drops/etc.

    I sleep with a strip of clingfilm over my eyes to hold in the moisture/grease, and a sleep mask over that. I used Tranquileyes for at least a year, but the clingfilm is more comfortable.

    Does anyone have experience of weaning themselves off greasy ointment and switching to gel instead, or especially switching to one application instead of two? All advice gratefully received!!

  • #2
    I'm so glad to hear that you are doing well, lisiamc!

    I stopped using ointments and use only Genteal Gel before bed. (I still use Dwelle every four hours all day.) However, I stopped setting the alarm and getting up in the middle of the night. If I happen to get up, I add Dwelle, but otherwise, I have been sleeping through the night since March 2008. (And, I *do* have ebmd in both eyes.)

    I'm really glad to hear that you do *not* have ebmd!

    It can be hard to give up part of routine, because no one wants to have erosions ever again. However, it is nice when it works out.

    Let us know if you try changing your routine and how it goes for you.

    Wishing you continued success,
    Liz

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    • #3
      Thanks, Liz. You've been my hero and my inspiration through all this! I thought if you were successfully treating your eyes and preventing the erosions from recurring, there was hope for me too.

      When I'm feeling brave, I'll try switching back to gel, and see what happens. And then I might even be able to ditch the alarm!

      Lisa

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      • #4
        Thanks for the kind words, Lisa. Cindy on this board did the same for me. Then there were lots of people with great moral support, like Rebecca, Lucy, Rojzen, Dianat, and Ian (as well as many others). I really feel like this place saved me.

        Thank goodness for the DEZ!

        Best wishes,
        Liz

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