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  • RCE diagnosis

    I introduced myself and gave some background in my intro thread, but I think maybe I should give an update.

    I'm being treated at the Moorfields, and they are definitely better than the local hospital. Thanks to the bandage lens I am now down to drops and don't need to use compresses overnight. On the flip side, I have to wear sealed dark glasses and can't really use my prescription lenses making me legally blind and have to be careful about reading or closework. I am still waking up at night, but now it is only once and seems to happen before an erosion. If I spend the next hour or so putting drops in every five minutes I can stop it happening. As I found out, if I don't put the drops in, an erosion happens very soon afterwards.

    The good news is that the bandage lens appears to be working, and the surface of my right eye is improving. I might dodge surgery. Unfortunately, there's a patch on my left eye that looks wrong, slightly wrinkled, and that's normally where the problem occurs so I've been told I might need a lens in the left eye once the right eye is done.

    On the other hand, after how bad it was in June I feel like my life is slightly more under control.

    Hi! I've been diagnosed with corneal erosion after my GP referred me (actual conversation: "Do you know the Moorfield?" "Yes?" "Go there now. They'll see you today.") Initially it was one eye. but now it seems to be both, and despite the gel my eyes are still getting stuck shut

  • #2
    An update: After nearly four months, the bandage lens is out and I am managing on drops only. The drops are going in every 30 mins or so thanks to the cold weather and overnight so it is difficult to sleep, but I haven't had another erosion so far. It seems the right eye is now in better condition than the left, so if the right eye stays stable over Christmas I'll be back in January to see about treating the left if that one doesn't improve.

    I seem to have avoided surgery, (it sounds like it probably won't improve things much more, and with the risks it isn't worth it) for which I am very, very, grateful, and I am managing to get a few hours work done a day. It isn't perfect, but it is so much better than it was. Fingers crossed it stays at this level.

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    • #3
      After Christmas I ended up with a lens in the left eye for three months, but there's been a lot of positive progress.

      I changed doctors and the new doctor wrote a prescription for my eye drops which has saved me a lot of money and made it much easier to get them. He's a lot better than the last NHS GP I saw (quote:"There's nothing we can do for you, you are going to go blind" - I am so glad I didn't listen and got a second opnion). The lens is now out, as the eye would no longer tolerate it, but I'm on stronger eyedrops, which when I am lucky will let me sleep for four hours at a stretch without sticking, unlike the Hylo-tears where I had to wake every 2. And with the use of F.lux and dark glasses I can use the PC again.

      The bad news is that this is genetic, so it is going to be something that is controlled, rather than cured. At least the pain is now under control which, after the state I was in this time last year, is fantastic.

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      • #4
        Hi Keely,

        Can you ask Moorfields whether you could be considered for Prokera amniotic membrane contact lens?

        Moorfields do seem to offer Prokera judging by this old tweet, though they may only consider it for things such as chemical burns since its indications for other uses may not be yet approved here compared to America ( http://www.biotissue.com/products/pr...dications.aspx ), you may still be able to get approved if you've already tried everything else available.

        Just used amniotic membrane #ProKera contact lenses for severe chemical burns. $1000 each! The #NHS is amazing! - Mr Romesh Angunawela, Consultant Eye Surgeon - Moorfields Eye Hospital. Corneal specialist
        https://twitter.com/your_2eyes/statu...35181889691649

        Here's a nice testimonial from a woman who found Prokera helped their recurrent corneal erosions:

        https://www.youtube.com/watch?v=KV2Mqkfg9Dw
        Sufferer due to Toxic Epidermal Necrolysis.
        Avatar art by corsariomarcio

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        • #5
          Originally posted by PhoenixEyes View Post
          Hi Keely, Can you ask Moorfields whether you could be considered for Prokera amniotic membrane contact lens?
          I can but right now I can't have any lenses in my eyes. The last lens didn't come out cleanly because apparently my eyes don't heal properly. If the rough patch heals OK I should be able to manage with drops, if not I'll bear the Prokera lenses in mind for my next meeting. Thanks for the tip.

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