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    Old 02-07-2006, 03:53 AM   #16
    Sheila49
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    Re: Recurrent Corneal Erosion

    Hi everyone, I wish I could say I was writing with good news but even though I thought my eye was getting better it has started bothering again and my eye dr. and I are thinking of going to another step besides ointments, etc. I do agree with Mike that adding the drops in the morning, or anytime I wake during the night is a big help but it just doesn't seem to be curing the problem for me. Can you, Mike, or anyone, tell me more about the doxy/pred. treatments. I tried going back in the posts to see if there was a site or something to get more info on it. You seem to have faith in that treatment, Mike, did you try it yourself or is it just from what you have read. What is the long term prognosis. I would hate to use it for the 2 mos just to revert right back to problems afterwards. I realize of course there is no guarantee but would like to know what the percentage is for long term cure.

    Also, one suggestion to anyone out there who is having trouble watching tv at night because of the sensitivity. I actually found that by wearing sunglasses to lower the flashing lights on the tv it helped quite a bit. At least now I can sit and watch a little tv in the evening with my family.

    Thanks for any help, Sheila

     
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    Old 02-07-2006, 05:46 AM   #17
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    Re: Recurrent Corneal Erosion

    Will someone please explain Corneal Erosion for me? I've been told I have Corneal Dystrophy, is it the same?

     
    Old 02-07-2006, 10:20 AM   #18
    mike1961
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    Re: Recurrent Corneal Erosion

    Sheila - doxycycline is really a great medicine to help treat occular surface injuries. You should consider doing an internet search on doxycycline and "surface repair" It helps the cells to "stick down" and is very effective in treating RCES. Once the base cells of the epithelium get good adhesion, erosion is less likely. Also, it's just an antibiotic so it is not like you are going to extreme measures by going on it for a few months. I'd still use the artificial tears upon awakening in conjunction with the doxy. However, RCES takes a long time to heal because it takes a long time for the epithelium to build up again.

    And to answer your question...yes I was on doxycycline 100 mg / daily after my massive 10 day erosion back in July 2004. I used it for around 2-3 months along with adding drops every time I awakened and ointments at night. But, I never did go on the doxy / prednisone combo. That or Dehydrex probably would have been my next step and then PTK.

    Sheila - also you don't use it for 2 months and then just revert back to where you were. This is because the doxy helps the base cells really stick down tight so you are less likely to have erosions or at least major ones. I would still continue to add drops when awakening and use Muro ointment at night for at least a year but the doxy could make an enormous difference.

    Mike

    Last edited by mike1961; 02-07-2006 at 11:02 AM.

     
    Old 02-08-2006, 07:25 PM   #19
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    Re: Recurrent Corneal Erosion

    Hi eveyone,

    I am just curious. I don't have corenal erosion but severe dry eyes.

    I wonder if the symptoms for both problems are similar.

    Do you get severe pain at all? And also do you get weird colored outline around an object you are looking at? When I look at a cup, for instance,
    I see a weird yellow color around the edges. Do you get this?


    I would appreciate any response.

    Thanks
    Steve

     
    Old 02-08-2006, 08:13 PM   #20
    mike1961
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    Re: Recurrent Corneal Erosion

    Steve - I know there are several threads here at the healthboards on "dry eye syndrome" It's very different than RCES in that with RCES (recurrent corneal erosion syndrome) the pain almost always occurs upon awakening. In general, with RCES the epithelial cells "slough off" or "erode away." Often, what happens is one may sleep with their eyes just slightly open which has a tendency to severely dry out the eyes. Also, in general, no one produces tears while asleep. So, when one moves their eyelid right as they awaken (when they first blink) the eyes are so dry that the eyelid literally "scrapes or brushes" the epithelial cells right off the eye causing severe pain. Sometimes (depending on the degree and whether one has a dystrophy) the cells do not "stick down" tight enough thus making it even more likely for them to slough off when awakening. Afterwards, the surrouding cells "fill in the gap" or the "erosion" and the pain tends to subside as the day goes on. I think with dry eye syndrome it's different in that there is not intense pain upon awakening which then subsides as the day goes on.

    Hope that helps,
    Mike

     
    Old 02-09-2006, 09:20 PM   #21
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    Re: Recurrent Corneal Erosion

    Hey everybody, haven't been on the site for a while. Just wanted to say "hi!" Thanks Jane for the makeup info. I haven't worn makeup on a regular basis for a while but now I definitely couldn't with the muro. I have recently purchased genteal drops and ointment. So far so good. No erosions for like a week but as soon as I think I'm good, bam! Who knows, what have I got to lose. I suppose I can at least wear a little mascara and eye shadow with the genteal ointment! Any upside is good as far as I'm concerned. Hope to keep in touch everyone. Good luck!
    Joelle

     
    Old 02-13-2006, 04:51 PM   #22
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    Re: Recurrent Corneal Erosion

    Oh My... Glad to find some people where I think I may relate, yet if this is what I have, I have a very severe case. I have been to three doctors and told I have corneal erosions and filamentary keratitus. I am going crazy. This has been going on steadily over 4 months, and the the only I have had relief is when I had a bandage lense on. But they had to take it off for fear of infection. Then I developed and edema (swelling) and they will not put at lense in anymore. Ive done it all, about all I have read on this thread, steroid drops, liquid tears constantly, different brands, muro, antbiotics, anti-inflamatory, ointments at night, nothing works! My eye looks like a mess, swollen lids, red, dripping water, rapid blinking, the pain ranges from very annoying to excruciating, nothing is ever mild. I have been to the ER and called my GP begging for pain pills. Anyone else done that?? I am currently out of them. And these eye docs are so nonchalant about everything. "It will heal in a couple of days." None will cough up any pain meds. All say it`s going to heal but we are still waiting months later, no improvement. One said, "it shouldnt hurt that bad." Well I got news for you! I cannot work. This is no life. I want the eye out if it is going to cause so much trouble. Help, any thoughts appreciated.

     
    Old 02-13-2006, 07:31 PM   #23
    mike1961
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    Re: Recurrent Corneal Erosion

    Jonny - have you read my posts? Have you tried to learn to wake up with your eyes still and closed? Then before moving your eyes, add lots of artificial tears, wait 20 seconds then slowly open your eyes. Also, consider using Muro 128 during the day as well as at night...be sure to warm the ointment.

    You said you tried antibiotics...was it doxycycline for 2 months combined with prednisone at the same time? This has over a 90% cure rate.

    Don't sleep on your back.

    Have you considered either Dehydrex drops or PTK? PTK has a 99% success rate.

    Have you seen any corneal specialists? Keep seeing eye docs until you find a good match...Many of us here have been to several before we found one who we like.

    Mike

     
    Old 02-14-2006, 08:29 AM   #24
    Jonny412
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by mike1961
    Jonny - have you read my posts? Have you tried to learn to wake up with your eyes still and closed? Then before moving your eyes, add lots of artificial tears, wait 20 seconds then slowly open your eyes. Also, consider using Muro 128 during the day as well as at night...be sure to warm the ointment.

    You said you tried antibiotics...was it doxycycline for 2 months combined with prednisone at the same time? This has over a 90% cure rate.

    Don't sleep on your back.

    Have you considered either Dehydrex drops or PTK? PTK has a 99% success rate.

    Have you seen any corneal specialists? Keep seeing eye docs until you find a good match...Many of us here have been to several before we found one who we like.

    Mike
    I currently have no control over what I do when I first wake up as I am in another world... I can try this. Zymar is the antibiotic I have been on. I have written down the chemicals you spoke of and will ask my doc about getting them. I use muro but the drops... I have been to a corneal specialist, too smug and fast for me, denying my pain. Went to another othamologist, was an idiot. See an optometrist now, less expensive, says the same things the others said but is a lot cheaper and easy to get out on emergency. I am telling you, the pain is unbearable when it is flared up. I take hydrocodones a few times a week when it is at its worst, have to or I will lose my mind but the eye docs won`t prescribe them and my gp has cut me off. All running scared due to the junkies and federal monitoring. Most here seem to say it is worse in the a.m. Opposite for me, best in the a.m., worse at night. Has anyone else here reported filementary keratitus to go with this? I get that too. I`d read the whole thread here but cannot right now. Am going one eyed and have another medical condition... Thanks!

     
    Old 02-14-2006, 10:04 AM   #25
    mike1961
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    Re: Recurrent Corneal Erosion

    Hmm...why Zymar? Doxycycline is the antibiotic of choice for occular surface repair. If you have read this thread, I'm not understanding why you have not educated your doctor and insisted that he/she put you on Doxycycline and have opted for Zymar instead? Zymar is not going to do you any good for RCES except to get rid of an infection. How will Zymar help corneal erosion? It won't, but Doxycycline will.

    Also - awakening with your eyes closed is a skill that you must force yourself to do. Pain should be a good enough motivator to help yourself learn this skill.

    I can certainly understand your frustration but if you are on Zymar - you clearly have not "tried everything" as you indicated in your original post.

    Personally, if I were you I would trash the Zymar and I would ask my doctor for a doxy prescription and I would try to wake up eyes still, closed and relaxed and drench my eyes with artificial tears before moving my eyelids. In my opinion, that is the right road of choice as to where to begin with treatment.

    Another thing - if things are not working for you - why are you still using Muro drops? They don't work for everyone. For some, they make things worse. Why not consider going off the drops and just using only the Muro ointment and see how that works. If you choose to do this, consider warming the ointment tube under warm water before applying it.

    One last thing and I hate to say it but if you are wacked out all the time on Hydrocodone, that may explain why you are so out of it when you awaken. You may have to go off the Hydrocodone pain killer in order to learn to awaken eyes closed, still and relaxed. Hydrocodone is certainly no cure...in fact, it probably "slows the healing process" because like all pain killers, they tend to slow everything down." It's one thing to take it after you awaken with an erosion and have already done everything else to limit the severity of the erosion including not blinking for 15 minutes, eyes closed still and relaxed while applying lots of artificial tears. But, since erosions do tend to get better as the day goes on, I certainly would have a difficult time seeing the necessity for taking it most nights before falling asleep unless the erosion was really massive.

    You don't have to be a victim in all this. There are many things you can do. Keep at it - we do know what you are going through and the frustration.

    Mike

    Last edited by mike1961; 02-14-2006 at 10:14 AM.

     
    Old 02-14-2006, 01:13 PM   #26
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    Re: Recurrent Corneal Erosion

    Mike is right about keeping the eyes closed in the morning, unfortunately I always had difficulty with that as I would awaken in the midst of an erosion - I think my eyes flutter or open while I'm still asleep - but, I did find something that has been helping me. Instead of using Muro ointment at bedtime I've been using a blob of Genteal Gel. It actually feels good in the eye and when the eyes are shut it tends to form a slight crust on my lashes which helps to keep the eye shut. Every time I awaken I put drops in the corner as Mike suggested, slowly open my eye and gently remove the crusty stuff, and then reapply more gel before going back to sleep. This new routine has helped me tremendously and I wanted to share my findings with everyone else on the Board.

     
    Old 02-14-2006, 03:20 PM   #27
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    Re: Recurrent Corneal Erosion

    Squirrel - you're absolutely right and that's great to hear. I also remember reading something about Celluvisc gel (or something like that) doing the same thing as the Genteal Gel you mentioned where it forms like a sticky crust to help keep the eyes from opening. I suppose either that or an eye mask should help. For me, I've been able to keep my eyes closed without using either. I do use muro ointment at night though. I find that I just place edge of the pillow right above my eyes on my forehead so that it sort of applies a very slight pressure to keep my eyes closed. It probably helps and it's so close to the position I always use to sleep in anyway before I suffered from RCES. Perhaps the fact I usually sleep on my stomach helps me to keep my eyes closed or just that I've been doing it for so long it's like second nature now. Whatever one does, don't sleep on your back.

    Mike

     
    Old 02-14-2006, 06:47 PM   #28
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    Re: Recurrent Corneal Erosion

    Mike,

    Thanks for the help. I do not know when I get erosions, but unlike you and many of the rest, my problems do not seem to begin in the a.m. In fact this is the best time. It is typically the worst at night. And I almost always have some level of foreign body sensation in my right eye. At night though is it usually goes in the toilet, blinking rapidly, swelling lids, stabbing pains and deep aching the spread all on that side of my head. My only success has been a bandage contact lense. In the past this would fully resolve it then the doc would get all confident and take it out, fews days later the syndrome is back on. This cycle has been going on four months. I think I have what you have as my doc`s description sounds like it verbatim, though I have been diagnosed with filamentary keratitus (no filaments in a while). I will try those drops you mentioned, hope my insurance will pay or I may be out of luck! As to waking up, well, my first awareness of being awake has always related to seeing, eyes open first, "I am awake." Have never asked anyone of they typically wake up with their eyes closed but bet my experience is common. Will see what I can do based on what I read here. The pain pills I am sure have nothing to do with it. I only take them occasionally, when the pain is unbearable. Plus I am withdrawing from a nasty drug anxiety med called Klonopin. Double whammy here...

     
    Old 02-14-2006, 07:14 PM   #29
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by mike1961
    I can certainly understand your frustration but if you are on Zymar - you clearly have not "tried everything" as you indicated in your original post.
    P.S. I think this statement is a bit uncalled for Mike. Seems to make me sound like a liar. The context of course was that I had "tried everything" I then knew of, related to research and advice from three docs. Of course I came here hoping for new information...

     
    Old 02-14-2006, 09:16 PM   #30
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    Re: Recurrent Corneal Erosion

    Quote:
    Originally Posted by Jonny412
    P.S. I think this statement is a bit uncalled for Mike. Seems to make me sound like a liar. The context of course was that I had "tried everything" I then knew of, related to research and advice from three docs. Of course I came here hoping for new information...
    Hello - sorry if I offended you - it was not meant to be harsh. I only meant it in a "factual" and objective sense in that it would offer you some hope and direction. On that note - I hope you accept my apologies if there was any misunderstanding. I know how frustrating things can get when it almost feels like "life's coming to an end." We so quickly expect doctors to be able to "fix" this thing and I don't know if we as a group here are "the norm" or what but it seems like is that many of us here have been very frustrated with many doctors until we find someone who may be a bit more knowledgeable and empathic. Now is when you need to use all your resources and clearly the internet is among the best. I'd also advise you to continue to seek out doctors until you find one who you can trust and believe in.

    Other than that it almost sounds to me like from your last post that you said (if I understood it right) ....you said

    "I do not know when I get erosions, but unlike you and many of the rest, my problems do not seem to begin in the a.m. In fact this is the best time. It is typically the worst at night"

    That is very important because from that information consider the possibility that you don't have RCES and were misdiagnosed. You may have Filamentary Keratitis as you said combined with Dry Eye Syndrome or perhaps something elese. You may need to seek yet another doctor's opinion because most often RCES occurs when one awakens from sleep. Also, we all KNOW when we have an erosion...There is no "question mark" on this at all. So for you to say that you don't know when you get them makes me wonder if it's really the "Filamentary Keratitis" (or perhaps something else) that needs to be diagnosed and treated. Granted it is possible that you may have RCES combined with something else (such as Dry Eye Syndrome or perhaps an infection or something else). It's also possible for an erosion to get worse as the day progresses but most of the time and most of the erosions will happen upon awakening, the person feels mild to severe pain and it all too often gets better as the day progresses. So - I don't want to discourage you by saying you may not have RCES but I would certainly continue to seek treatment for Filamentary Keratitis (and be sure that is what you have). I just don't understand from your last post why they diagnosed you with RCES. If you cannot find a doctor to help you with this or don't know where to look next - perhaps there are some universities where you live that may have medical research facilities (eye institutes) that you can find out about. Did all three doctors diagnose you with RCES? Something just doesn't seem right about that diagnosis.

    Best to you,
    Mike

     
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