I have been bothered with Recurrent Corneal Erosion since last November and am being treated with Muro 128 5% ointment at night and eye drops/gel during the day but I am still bothered upon awakening during the night with extreme pain in my right eye. It happens about every 2 - 3 nights (the longest I have gone without the pain is 6 nights). Just when I think things are getting better it happens again and the eye is extremely painful for at least an hour and uncomfortable for several hours after each episode. My doctor said to keep the eye as lubricated as possible, but that they may have to resort to some type of surgical procedure if things don't clear up on their own. This problem happened suddenly with no injury or other reason. Has anyone else had a similar experience? I'm scared to have any type of surgery but am now wondering if the current treatment will ever work. I am getting discouraged.

I am sorry to hear that you are having such a bad time. I have experienced something very similar. I had a very severe corneal ulcer in my right eye in January of 2002. It did not respond to regular anti-biotic drops (Ocuflox, Ciloxan, Quixin) so my doctor had to have drops specially compounded. I was on fortified Vancomycin drops and fortified Tobramycin drops for about a month, around the clock. (every half an hour during the day, every two hours at night.) The after I came off of the fortified drops I was on regular anti-biotic drops for at least another month. Finally it started to heal, but then every time I blinked some of the corneal surface would get rubbed off. So, my doctor used a bandage contact lens with me. That is a non-prescription lens that the doctor puts in, and the patient does not touch. It allows the eye to heal by acting as a shield between the eyeball and the eyelid, so that when you blink the surface of the cornea is not rubbed away.

Do you at least get any breaks from the pain? My problem was a little bit different than you, and my pain was 24/7. You know that it feels like somebody is stabbing you in the eye with a knife. Although, once I fell asleep it never really woke me up. But it sure took a while for me to fall asleep!


I think that the bandage contact might be the best thing for you. And your doctor is right about the lubrication. The more lubricated you keep the eye, the easier it will be for it to heal. I used tear drops 30-40 times a day when I had the ulcer, because I was not really producing any of my own tears. Ointments are good too. They really help with the discomfort. Only, I was not allowed to use any ointments when I had the ulcer because if you put in an ointment and then try to follow up half an hour later with drops, the drops will not be absorbed.

What kind of surgery is your doctor suggesting? Can the erosion be repaired surgically? Fortunately I did not have to take that route.

Also, has your doctor cultured your eye to see if there is any sort of viral infection or bacterial infection, or fungal infection? A culture should hopefully tell him exactly what is growing in your eye. My doctor cultured my eye immediately after he diagnosed me. But the lab could never identify what grew. So, my dr treated me with the most powerful anti-biotics available, and they eventually killed whatever it was.

I will never, ever forget my corneal ulcer. It was the most painful thing that I have ever experienced in my life. I once called my doctor crying in pain. I had to see him every single day (including weekends) for a month. The eye is a very fragile thing, and when you are dealing with a problem like this, the tiniest little thing can set you back. Then, about 2 weeks after the ulcer was finally healed, I got an abbrasion in the same eye! Luckily that was easily treated. It is an experience that will stay with me forever!

I find that for the pain, cold compresses are the best. I wet a clean washcloth and put it in a zip-loc bag and leave it in the fridge, that way it gets really really cold. Then I put it on my eyes and lay there for hours. I have also found that sleeping with a warm air humidifier reduced the risk of my waking up in pain in the middle of the night due to dryness.

Good luck. I hope everything works out and you don't need surgery. That would terrify me too. But if you trust your doctor (I'd trust mine with my life!) then you have nothing to worry about. Please keep me posted,

Elyse
http://www.healthboards.com/ubb/heart.gif

[This message has been edited by purple2067 (edited 02-11-2003).]

[This message has been edited by purple2067 (edited 02-11-2003).]

P.S.

Don't get discouraged. You have to keeo fighting, and eventually you will win! http://www.healthboards.com/ubb/smile.gif

Purple, thanks for your response - it is good to know that I am not alone in this. This is the first time I have used Healthboards. I do have breaks in between the pain, i.e. I put the Muro cream in at 1:00 this morning but awoke with the pain at 1:30 (it must be awful to be in pain 24/7). It is a quick stabbing pain, then feels like there is a boulder stuck in my eye with burning (if I place my finger on the closed lid it feels like there is raw flesh beneath). I put a warm compress on my eye and by 2:00 it felt better and I was then able to open the lid to put in more cream (I'll have to try cold as you suggested to see if that helps better). This morning it feels irritated but tolerable. There is nothing worse than trying to use the computer at work when you're eye is in pain. Last week I had such a day - it woke me up 2 different times during the night and then I got the extreme pain again before leaving for work and it persisted for the entire day; I had to keep blinking from the pain and the eye was watering so much that everyone thought I was crying. It is just that it keeps happening - this week it has happened Sunday, Tuesday, and today, although by daytime it has been better. I don't believe my MD ever cultured by eye; how is that done? I have been to 2 different doctors and they both put a dye in my eye and looked at it under a microscope. Both said they saw an area that was "weakened". She wants me to call for an appointment when I am in extreme pain so that they can "map" the eye to pinpoint the exact area in case I need surgery in the future, but the day I was in pain, she was not in the office. The surgery mentioned was either debribing the area with a diamond burr, anterior stromal puncture with a bent needle, or PTK, which is removal of part of the cornea with a laser(none of which sound like fun!!!!) I have heard of the bandage contact lens, although my MD has not mentioned it. Is it uncomfortable? I have also heard of some MDs treating with plugs in the tear ducts to prevent the eye from drying out (that doesn't sound like much fun either!!!). I was initially using erythromycin antibiotic ointment, but my doctor switched me to the Muro as that is supposed to help the cornea area that is weakened to reattach. It is just so strange that this problem started without warning. I just awoke 1 night with a sharp stabbing pain and thought an eyelash had fallen in my eye. Here I was, up in the middle of the night, with a mirror trying to see what had fallen in my eye, but nothing was there. By morning the pain was gone so I figured the eyelash fell out on its own, but then that night the pain repeated itself again and it has been off and on since then.

Originally posted by purple2067:

Also, has your doctor cultured your eye to see if there is any sort of viral infection or bacterial infection, or fungal infection? A culture should hopefully tell him exactly what is growing in your eye.

Recurrent corneal erosions do not need to be cultured. The causative agent is not infectious.

Squirrel,
The surgical options the doctor explained to you are very simple procedures. You need not worry and don't be afraid. Your doctor will intervene surgically, if necessary, as a last resort. Hopefully, the medications will do the trick.

A bandage contact lens is an option. If that is necessary, make sure it is a Focus Night and Day contact lens. That lens will be the safest for your eye.

HTH

For me, the bandage contact lens was not uncomfortable at all. In fact, once my doctor put it in, I did not have half as much pain! I guess that is because my eyelids were not runnbing up against the surface of the cornea as I blinked. But my problem was that my eye was so dry that the lens sometimes fell out. When that happened I had to call him and run to the office and have him put in another one.

I have a question for qwerty: If the cause of recurrent corneal erosions is not infetious, then what are the possible causes?

Squirrel, when the doctor cultures your eye he/she numbs the eyeball and uses a very fine needle to take several scrapings from the affected area of the cornea. The scrapings are each preserved in solution, and sent out to a lab to test for bacteria, viruses, fungus, etc.... It's not as bad as it sounds, trust me. http://www.healthboards.com/ubb/smile.gif

The cauterization is really not that bad either. It is a very simple procedure. If your eyes are that dry, then plugging would probably be a good thing to try. For that all the dr does is put some numbing drops in your eyes and use a very very small tweezer to insert a microscopic plug into your tear duct. The whole thing takes about 30 seconds per eye, and you don't feel anything except a little bit of pushing.

I'm curious, where in the US do you live? There is a doctor in Maryland who is one of the top corneal specialists in the world. I drove 4 hours from NY just to see him. His name is Dr. Terrence O'Brien and he is at the Wilmer Eye Institute at Greenspring Station, in Lutherville, Maryland. I would try to get a few more opinions before opting for any sort of surgery.

Also, I have never used Muro ointment. What kind of medicine is it? Allergy medicine? Anti-biotic?

Good luck and keep your chin up!

Elyse
http://www.healthboards.com/ubb/heart.gif

Originally posted by purple2067:


I have a question for qwerty: If the cause of recurrent corneal erosions is not infetious, then what are the possible causes?

Also, I have never used Muro ointment. What kind of medicine is it? Allergy medicine? Anti-biotic?



Corneal dystrophies and eye injuries can cause recurrent corneal erosions. Rarely, there can be no known cause.

Muro 128 is a hyperosmotic. It is used to pull water out of the cornea, or make it drier. In other words, it basically dehydrates the cornea.



[This message has been edited by qwerty75 (edited 02-12-2003).]

From what I understand, Muro is basically 5% salt (sodium chloride). It is supposed to dry out the water behind the cornea so that the cornea will stick on the underlying surface better. The ointment also contains lanolin, mineral oil and petrolatum so that it keeps the outer surface of the cornea moist. (The Muro drops did seem to dry out the eye and I was unable to use them, but have not had that problem with the ointment). Maryland would be quite a trip for me (though not impossible) as I'm from Massachusetts. My doctor is a professor at a major Boston University so hopefully that means something as to her qualifications, but I would probably seek a 2nd opinion before any type of surgery. I was reading on a website that the PTK laser surgery is very painful for a few weeks after the procedure is completed as they are basically creating a bigger errosion that takes time to heal. Since I have an allergy to most pain medication - that would probably not be a good option.

I am in a very similiar situation to squirrel2349. I have been having problems on an almost daily basis for the last three years with both of my eyes. When things are going good, I will go as long as 10 days without an episode. It is hard for me to convey the level of frustration this causes me and the negative impact it has on my life.

I own a small software development company and spend typically 10 to 14 hours a day on my computer. 95% of the time the erosion will impact me for less than one hour. However, the other 5% of occurances impact me an average of 5 days because of infections when an episodes occur. That is 5 days of not being able to see, not being able to go outside because of the sunlight, and not being able to work.

My episodes usually occur around 5:00a.m. when I'm still sleeping although they have happened in the middle of the day as well. If things go good, I will close my affected eye for approximately 30 minutes and the tears from the pain will form a "bubble" of liquid where my eyelid does not touch my eye. This usually causes the eye to heal on it's own. When the infection happens and the eye won't heal on it's own, I'll go to the doctor and get a protective contact lens and TobraDex which usually solves the problem after 24 to 48 hours.

My brother is an eye doctor but he lives 3 states away. I have had several conversations with him as well as my eye doctor here in Seattle and their recommendations are always the same. Use lots of eye drops during the day and Muro 128 at night. I still do use the drops but I think the Muro is a waste of time. BTW, they both say that the time in front of the computer is not the problem.

The other alternative they have mentioned is micro-puncture (poke a needle in my eye so the cells can form a new layer over the cornea). This procedure can have adverse effects which is why I have not tried it yet. One of these days I may get so frustrated that I'll try the micro-puncture but I want to do more research on the procedure to make sure I don't end up with more problems that I have now.

Has anyone been able to tell you why it keeps happening? The only answer my doctor has given me is "lubricate, lubricate, lubricate every time you awaken". Even if I use lots of the Muro ointment several times during the night and my eye is well lubricated, it still happens. Last night was OK, but the prior night was awful and I didn't do anything different either night. I have had the erosions happen within a 1/2 hour of using the ointment. Luckily, most of my episodes have happened during the night, although it did happen 1 time during the morning and I had an extremely miserable day at work. I too, stare at a computer most of my 8 hour workday. I have heard of the various surgical procedures, but I want to avoid that if possible. You're right, you certainly don't want to make matters worse.

They both say it happens because the eyeball swells when you sleep and causes additional pressure between your eyeball (mainly the cornea) and the inside of your eyelid. When you open your eyelid or move your eye with this additional pressure, some of the cells on your cornea cannot withstand the additional pressure and therefore are torn away.

This makes perfect sense because no matter how much Muro I packed in my eye before I would go to bed, I would still have problems....which tells me it's not a lubrication problem. I believe it's a pressure problem.

Although I can appreciate your doctor's and my doctor's advice on lubrication...my sleep patterns make it almost impossible for me to be able to awake during the night to put lubrication in and then attempt to fall asleep.

I started to search the web last night to see if there is a way to reduce/eliminate the swelling of the eyeball when I sleep. I haven't come accross anthing yet but will continue to search. I'll let you know if I find anything.


[This message has been edited by eyepain (edited 03-06-2003).]

That makes sense, as it has happened many times when my eye couldn't possibly have been more lubricated. We just need to find out what causes the swelling to occur some nights and not others. My doctor said the salt in the Muro is supposed reduce the Edema (swelling) in the eye by reducing the water than accumulates behind the cornea causing the eye to swell. I don't know if the Muro has actually been helping me, but I'm afraid to stop in case it gets worse. I have an appointment with the doctor tomorrow so we'll see what happens then. Let me know if you find any info on the internet - I have searched and found nothing except that the erosions can recur and the various surgical options to attempt a cure (none of which are guaranteed). What is the bandage contact lens like? Is it like a normal contact lens that you and put in or out yourself? At least it is a help to access this Board and to at least know that I am not alone in this. Take care!

[This message has been edited by squirrel2349 (edited 03-06-2003).]

Originally posted by squirrel2349:
We just need to find out what causes the swelling to occur some nights and not others. My doctor said the salt in the Muro is supposed reduce the Edema (swelling) in the eye by reducing the water than accumulates behind the cornea causing the eye to swell. I don't know if the Muro has actually been helping me, but I'm afraid to stop in case it gets worse. What is the bandage contact lens like? Is it like a normal contact lens that you and put in or out yourself?

Everybody's cornea swells about 5%-10% at night while sleeping. The muro decreases this swelling,... so it does help with reducing the occurance of corneal erosions. Another factor is mechanical forces between the corneal epithelium and the inside of the eyelids while sleeping. (Our eyes do in fact move a great deal while asleep). A silicone hydrogel bandage contact lens may be helpful in your case, Squirrel. It can be worn all day and night for several weeks. IMO, a silicone lens, frequent lubrication, and occasional use of Muro drops (all under the supervision of your doctor) will lessen the frequency of the erosions,... and possibly eliminate them completely.

HTH

I used Muro every single night for 3 months and it did not reduce the frequency of occurances. I'm not saying Muro doesn't work....I'm saying Muro did not work for me.

I am going to try the lenses to see if they work.

I went to my doctor yesterday and she said if the erosions continue the next step would be a procedure called "stromal puncture". She explained it briefly and it sounds awful. Has anyone had this procedure? Is it painful - during or afterwards? Hopefully I won't have to resort to that option, but I'd like to know more about it just in case.

Originally posted by squirrel2349:
Is it painful - during or afterwards?.

No and no.

Qwerty,
Have you had this procedure? Can you give me any more details about it?

I've also been having recurrent corneal erosion. I have been using muro 128 5% at night. It's been managing it okay... i would only have a major recurrence every month or so. Before I used muro, I used to have to go to the eye doc and get it debrided and patched.

The thing is, the company recently changed the formulation of Bausch And Lomb Muro 128 ointment. I don't know if any of you know about this, but the new solution actually does not manage the RCE well for me. So now I wake up almsot every morning with a mini-RCE.

Help! Do any of you guys know of or can recommend any other hypertonic ointment or ointment for the eye that has managed your RCE well?

THanks!!!!

BTW, to purple and to eye pain, I am also trying to go see dr. o'brien in baltimore. I need to get to the bottom of this RCE. It's just horrible living with this condition.

Hey RCE sufferers. Just had my second stromal puncture two days ago. (I posted that night but haven't seen it show up.) The procedure is entirely painless and has about an 87%success rate. Unfortunately, I was part of the other 13% the first time around but it did keep the erosions away for about 6 months. If your conditions are as severe as they sound you are definitely a candidate for either stromal puncture or PTK. I know from much (agonizing) expereience RCE has to be treated as aggressively as possible. The fact that you are having several recurrences is evidence to the fact that your treatment isn't working! Be very demanding with your health care provider. They don't know how excruciating and debilitating this condition is so you have to let them know and make sure they treat it aggressively.

Also, you've probably had "numbing" drops when visiting your opthamologist which they can't prescribe because it causes whitening of the cornea if over used. Sound familiar? Well, there is a version without the preservative called tetracaine which CAN be used on a regular basis to alleviate symptoms temporarily. I don't think I would have made it through my last episode without it so check into getting that as well.

Best of luck to you.

Hi rcepain,

I'm just curious...what is the name of the dr that you have been seeing in NY? Good luck with trying to get to see Dr. O'Brien. You will get an appointment, but you may have to wait a while. I originally had to wait about 2 months for my appointment (and that was after the 2 weeks that it took for them to receive my chart, because the post office never delivered it). I called in early december for the appointment, and was given a date of February 17, 2003. My dr was not happy with that at all. He didn't want me to have to wait that long, so since he knows Dr. O'Brien personally, he called him. I am not sure if he even got to speak with him, but he sure turned some heads over there, because they changed my appointment from February 17th, to January 2nd! After you send them your chart and you are sure that they have it (call them every day until you know they have it!), you might benefit from having your dr call. I also sent a personal letter with my chart, explaining all about my problem and how much I needed his help. Well let me tell you, between my letter and my drs phone call(s), when I got there Dr. O'Brien said that HE had been waiting to see ME, and that he was very anxious to get me into his office! He is a very very nice man, and a world class doctor. If anybody will know how to help you, it is him.

Good luck, and please let me know what happens,

Elyse

P.S. If you see Dr. O'Brien, tell him that Elyse from SI says hello....he'll remember me not only because of my letter and because he knows my dr, but because I was the one who came to Maryland to see him for my EYE problems and wound up in the Emergency Room at Baltimore Sinai Hospital with GALLBLADDER PROBLEMS! He asked me how I liked Baltimore, so I said "well, your hospitals are very lovely!"

Hey "2K", How has it been going since your 2nd stromal puncture? Hopefully it will work for you this time. Can you describe each step of the procedure for me? I know they stick needles in the eye after numbing it, but that is about all I know. My eye doctors both said they can't prescribe the anesthesia drops because they delay the healing of the cornea. Is Tetracaine different? I sure could use something like that during the episodes. (I actually went 11 days and thought things were healed and then it happened again - at least 11 days is better than 2 or 3!)

Hey "eyepain", How's it going for you? Any luck on your research into corneal swelling? Since your brother is an eye doctor - what do you know about stromal puncture? (I was really hoping this RCE would heal on its own as I really don't want to resort to any type of "procedure", but I can't live like this forever either)

Are your eyes dry feeling also? Mine feel burning and dry, especially by evening and even though the RCE has only been in my right eye, when I awaken during the night my left eye feels dry, scratchy and pulling when I open it.

Hey Squirrel. Thanks for the inquiry. My eye is healing nicely but suffice to say my optimism is gaurded. As far as the stromal puncture procedure goes there's very little to it. You're given a VERY effective topical antsthetic with a cotton swab. Once that takes effect, the doctor makes several tiny punctures in the area of the erosion with a special needle. It is slightly curved with a sharp bend at the tip which only allows it to penetrate to a certain depth. He or she may have an assistant hold your eye open to prevent blinking. The whole thing takes about two minutes and is totally painless. So far it's statistically the most successful treatment for RCE.

Regarding tetracaine, I was also told it could slow down the healing process but having been through RCEs with and without it, I honestly don't think there was a difference except that it was exceedingly more painful without it. Of course, you have to use some self discipline and not put drops in at the first sign of pain. I keep a bottle in my "emrgency eye kit" along with several different drops and a bandage lens - all of which I more or less demanded my doctor give me in case I have an erosion while away from a hospital (such as a backpacking trip).

Finally, I'm curious about this dry eye thing too. I also have problems with it in both eyes although my RCE is only in my left. I'm wondering if it's a symptem of this condition or precludes it. (Although I don't remember having it so acutely before my erosions.)

Hey 2K, I was glad to hear that you are doing well. When you had the stromal puncture done, did you see the needle coming at you? (I don't know if I could stand that!) Do they patch your eye afterwards? Can you drive home after having the procedure done? Do you have to take any special medications afterwards? I hate to be a pest with so many questions, but I want to know as much as possible about this procedure in case I have to have it done and I can't seem to find much on the Web about it. I don't remember my eyes feeling dry before the erosions either, but they sure do now, but maybe I am just more aware of it.

Hi Squirrel. Let's see...(pardon the pun). You can't really see the needle because it's so small and so close to your eye. Try holding the tip of a pin an inch from your eye and you'll see what I mean - your eye just can't focus on an object that small at that close range. You're aware of being "poked" but you truly feel nothing. I was given a bandage lens rather than a patch this time but the first time I did have a patch. No special meds afterward other than antibiotic drops. I'd say have someone else drive - I did. And honestly, I was in less pain in the days following the procedure than I was before. Have you talked to your doc about having this done? Is he/she recommending it or are you just looking at options? If it's being professionally recommended then you really should do it. The risks are extremely minimal and at the very worst you won't be any worse off than you are now. Keep me posted if you get the procedure. Take care.

My doctor said that would be the next treatment option, but wants me to continue trying the Muro until my next appointment in May (unless, of course, things get worse before then). She is hoping that by using the Muro, that the period of time between episodes will lengthen and eventually heal completely. She keeps telling me to be patient and that it takes time. I have been using the ointment at night and she recommended using the Muro drops during the day. The 5% drops burned and irritated my eyes too much, so she said that even though the Muro would help to heal better, to just use regular over the counter drops/gel during the day if I find the Muro too uncomfortable, but just 2 days ago I bought the 2% Muro drops and even though they burn also it has been better than the 5%, so I will try that for awhile and hopefully that will help. Even though stromal puncture doesn't sound major, I still would rather not go that route unless absolutely necessary. Did your eye just feel scratchy after the procedure or did it feel like it does during an erosion? Since I am allergic to pain relievers, I want to avoid anything that could cause pain.

My optometrist also said I have RCE (Recurrent Corneal Erosion). The ICD code (International Classification of Diseases) or diagnosis code is 371.42

It first happened last November. I woke up one morning with pain and redness in my eye. So, I went to the optometrist. He said I probably scratched my cornea in the morning when rubbing away my dry eye mucus. He suggested I use the GenTeal eye drops occasionally during the day and the gel at night. I did for about a week and the pain and redness went away. Yet my vision was not the same. I seam to have a vision change in my left eye. Distance vision slightly improved and reading vision was slightly impaired.

So, I went to get new eye glasses. The optometrist could not get the right lens for the left eye to see clearest, so he chose the closest.

Anyhow, my problem does not seem as severe as some of the other posts on this message board. However it was occasionally bothering me. Occasionally slight pain upon waking up, yet not regularly only about once a month. The optometrist said no telling when it would happen again and he said just use the gel and drops. I work with computers, but the optometrist said that should not affect this condition. I don't know if that is true because sometimes I do get eye strain from working on the computer. I think the LCD monitors are better.

Thus, I decided to go to an ophthalmologist. By the way he gave me a diagnosis/ICD code of 918.1 (Corneal Abrasion). He said that I scratched my cornea and it did not heal properly, and that my eyelid sometimes pealed of the area. He suggested I use the MURO 128 5% Ophthalmic Ointment, every night for 4 months. He described it as a salt solution that would decrease the pressure in the eye at night (because the cornea naturally expands at night). I was told this is step 2 (if just eye drops don't work).

So, I am trying the MURO ointment at night now. He said if this doesn't work we can try a laser surgery. Has anyone had laser surgery to treat this?


[This message has been edited by EyeLog (edited 04-13-2003).]

I have read your recent postings with great interest.

I suffer from RCE for 8 years now (my 1 yr old daughter kicked me in the eye with a shoe) Since my multiday episode last week I wanted to now if my condition was common, so I consulted the internet. My first hurdle was finding out what the English word was for 'hoornvlies' (cornea). Reading your posts I found out lots of other sufferers exist with somewhat the same experiences.

One and a half year ago my condition impoved greatly. This was because my doctor used a cotton-tipped stick (like the ones you use in your ears) to roughen up the 'bad spot'. Since then my episodes where as frequent but more light and more early in the morning. This would mean that the time I would get out of bed the pain would be gone. You are quickly satisfied when having this condition....

Last week I was not that lucky and I had to vegetate in bed at least one day to avoid this to you probably well-known pain. Since this disease I can find the buttons of my bedroom remote-control blindly. Even using the other eye gives met too much pain.

This time the doctor did not use the cotton-tipped stick method...

What I find interesting are the differences in how RCE gets treated in the US vs here in the Netherlands. E.g. last week my doctor told me at first of this bandage contact lens as an alternative to using ointment. But she was very reluctant seemingly because of the large interval between my worse episodes and the disadvantages (e.g. infections)

Also finding out in this forum about the other different treatments (laser, neeedles and the like) was interesting.

I have the same experience that even when I use ointment in large quantities, still episodes occur (maybe because of this enlarging of the eyeball at night) Could it be that this eyeball enlargements differ between nights because of some unknown parameters, e.g. use of spicy food or something like that....

The most interesting aspect is that I am not prescribed NaCl based solutions (Muro), I am prescribed an ointment based on vaseline, wool fat (lanoline) and liquid parrafin, called Duratears Z. I understand that Muro on the other hand is liquid and has lanolin in it. Is that true?

I grab the possible importance of the dehydration effect of NaCl. So maybe Muro would be an alternative to try. Does the effect of the lanolin-only really last the complete night?

Regards to my fellow RCE-ers

It is always great to hear from others that have the same problem as I do. I don't know if it is the fluctuations in how much the cornea swells during the night or if it is more caused by REM sleep - the more the eye moves the more ointment is absorbed. I notice if I dream more a particular night I seem to have more of a problem. I have been using Muro 128 5%ointment at night - I put it in before going to bed and reapply it each time I awaken during the night. The Muro ointment is 5% sodium chloride in a base of lanolin, mineral oil, and white petrolatum - it does stay rather greasy on the surface of the eye. The length of time it lasts depends on how much the eye blinks. I sure wish someone would find a cure for this problem other than surgery type procedures. I did well for 10 days, but this morning had another episode upon awakening at 3am. Luckily this one wasn't quite as bad as previously.

Squirrel,

Nice to hear from you. I noticed you started this thread. Sorry to hear you had another episode.

I now understand that Muro is indeed an ointment, like the one I use. The only difference being that my ointment does not have the 5% NaCl in it. I will consult my doctor on this matter. In the Netherlands to my knowledge Muro is not prescribed. I assume petrolatum is the same as vaseline.

I would like to find a pattern in my episodes too. I noticed that when sleeping restlessly (waking up to a certain extent frequently at night), I should re-use the ointment to avoid problems. This wakes me up even further, but what the heck. This may be consistent with your REM/ointment usage theory, because then usage would occur during each sleep/wake cycle. I suppose however the problem occurs after this REM sleep, when the eyes are in a fixed state. This may still be consistent with your theory.

Drinking alcohol I always heard was bad, because of the dehydration of the eye-fluids, but on the other hand it may avoid swelling like NaCl does.... I offer myself as a guinea pig :-)

On the positive side: since my last episode I have experienced no problems at all. I now use eye-drops during the day even though I don't need them. Maybe it gives me an a swelling in advance, who knows....

On the other hand I have a gut feeling that before a big episode, several smaller episodes occur in the nights before. After the big episode things stay ok for a while.

Yes, petrolatum is the same as vaseline. In addition to the ointment, Muro also comes in a 2% and a 5% eyedrop - my doctor had recommended using the 5% during the day but I found it irritated and dried out my eye. I have been using the 2% during the day for awhile and that still burns, but doesn't seem to dry out the eye like the 5% did. Muro is not a prescription drug here in the U.S. but it is not out on the counter either - you have to ask the pharmacist for it. A lot of people must be using it because the last time I went to the pharmacy to buy some they were all out and had to order it for me. They said they had just sold the last 2 tubes (I never realized so many people have eye problems). Last night was better, although I awoke at 4:30 this morning with a sharp pain upon opening my eye and thought "OH NO IT IS HAPPENING AGAIN!", but I shut my eye and I quickly put some eyedrops by the corner of my closed eye and very slowly and gently tried to open it a little and within a few minutes it was better. I then put in a little more Muro Ointment. I just hope I don't have to keep this up forever!

Squirrel,

I have asked a doctor via the Internet a question on the added value ointments with NaCl added.

Indeed Muro is available in the Netherlands.

During prolongued RCE she says the effect is often not present anymore.

She probably means that any other ointment based on vaselin/lanolin/paraffin would do.

So it would not hurt to experiment with the ointment brand if your doctor comes to the same conclusion.

I also asked a question on how hopeless RCE is as a condition. She says it can take a long while but is still curable.

I can confirm that the frequency of bad episodes has decreased considarably since the eight years of my RCE. Note however that my condition was trauma induced.

Hello from Florida. My erosions started last June (2002) from a supposed scratch - never did figure out where that happened. Had about a 1/2 dozen RCE's between July and September. Debilitating - had to stay in a dark room, with eyes shut for at least a day at a time. After a nightmarish vacation to NH and VT in September, came home and immediately saw my eye doctor - he did the in-office needle puncture thing. For me, this was horrible - I was down for 3 days. Procedure wasn't anything spectacular, it was the pain during recovery that about killed me. However, it is best to take someone with you to hold your hand during the procedure - helps the mental status. This procedure did not work. End of October, went for the PTK laser surgery. Had learned many lessons in all this time - allowed my parents to take over and get me to their home (we live in the same town) where they made sure I stayed in one place, in a dark room, no books, no TV, no phones, computers, faxes, etc... Recovery was a breeze! Was able to tolerate pain killer Darviset (Vicadin made me ill)and no using my eye for at least 12 hours after procedure was the secret. That has lasted about 6 months. Had another RCE last week - out of the blue. From everyone's posts, happens to all of us in the middle of the night. Went back to eye doctor who recommended the Muro 128 for 2 weeks at bedtime. If this doesn't work, it's PTK again for me. Like everyone on here, it seems we've all done our share of research on the net. Good to hear there are others suffering from this problem - bad that we all seem to be suffering from it. There has got to be a cause and affect that is better than what we've been getting. It upsets me that this is such a painful and debilitating problem, yet the medical community doesn't seem to give it much credence.

Originally posted by prbangel:

yet the medical community doesn't seem to give it much credence.

PRBANGEL,
I think you are right. It is a nasty condition but not eyesight threatening. The only thing they worry about is infection and stressing that you should really use the ointment.

The problem is also that the intensity of the pain and the effects on your condition are difficult to describe. Especially because after two days you are 100% again.

I wonder if it will ever cure. Are there any success stories out there??? I suppose this forum is not representative.

I deduced those six months after lasering you were not prescribed the ointment. Peculiar..

I have the same experience as you on giving yourself over to episodes. It is no use going on, just vegetate till the pain passes away.

more than 1 week episode free!

PRBANGEL,
When you had the stromal puncture procedure, was the pain you experienced the same as during an erosion? My doctor wants me to have that procedure if my erosions continue, but I am very reluctant, especially since I am allergic to pain medication - it might be different if I was guaranteed 100% success, but that is far from true based on what I have heard and read about the procedure. Meanwhile, when I go to bed at night I just hope that I'll have another episode free night.


[This message has been edited by squirrel2349 (edited 04-28-2003).]

[This message has been edited by squirrel2349 (edited 04-28-2003).]

Hi!
I tried to post a reply a few days ago but I never saw it posted. So, if this is a duplicate, I apologize, and would someone please let me know http://www.healthboards.com/ubb/smile.gif .
I"m glad I found this board. I have had recurrent erosions since 1994 when I got a paper cut in my left eye. Then in 2001 I got scratched by my kitten in my right eye. So now I have them in both eyes (fortunately never both eyes at the same time!) Although it sounds like mine are not as severe as some of yours (I may only have an episode once every other week) when it does happen it is painful for a few hours afterwards. NO one really seems to understand though when they ask why my eye is watering. I faithfully used the Muro ointment for a good year or so after each eye was hurt. Then I tapered off but it seems like its been happening more lately. My eye dr checked my eyes for dryness and told me I have dry eyes, so use eye drops. She recommended the Moisture Eyes so I use that. I've been using that more lately because my eyes get so dry that they get tired. For me now, the eye drops during the day, even if they don't feel dry, and the ointment at night seems to be working OK. I have enjoyed reading your posts and learning. Its just nice to know that there are others out there who can relate!!

Hi all - in answer to questions... Dutch - seems the Muro 128 should have been prescribed long before now. However, I was on Quixin and a steroid for about 60 days after my laser. Eye dr. seemed to think that everything was good to go at that point, and the only thing he recommended after that was preservative free eye drops. From what I'm seeing, the Muro 128 is a standard for this kind of thing. My mother talked with one of my aunts over the weekend, only to find out she had a cornea problem several years ago and is never far from a bottle of Muro 128. And Squirrel - I don't know what to tell you, for me the puncture was very painful. It was like an erosion, except double the pain. The pain medication the dr. had me on was too high powered (vicadin) and made me sick. Throwing up with after an eye procedure is NO FUN! With the laser, he prescribed the Darviset which agreed much more. HOWEVER, as I said before, I did learn that I was much too stubborn for my own good the 1st time around. You really do need to lay around like 3rd base for at least 24 hours if at all possible. Ice packs probably helped mentally more than physically, but certainly made me feel like it was doing some good. Wish I could offer more suggestions.

[This message has been edited by prbangel (edited 04-29-2003).]

"sucha" - thanks for posting - it is always nice to hear from new people that have the same problem I have been struggling with for 6 months.
"prbangel" - thanks for the info - stromal puncture doesn't sound like something I want to try unless there is absolutely no other option. I read on the net about PTK, but my doctor has not mentioned it - she just said there are several treatments that can be tried if it doesn't heal by using the Muro and the next would be stromal puncture. Hopefully you won't have to go the PTK route for the 2nd time (I would think that would be more painful than puncture as they laser off an area of the cornea instead of just putting little holes in it?) Take care and let me know how it goes.

It's been awhile - how is everyone doing? My erosions had lessened in severity and frequency, but this morning at 4am I had one of the worst erosions that I have had in about a month. My eye is still very sore and scratchy, but at least I can now open it - at 4am it was so painful I couldn't even touch the eyelid with my finger. Just when I thought things were healing - now I'm back at square one.

Squirrel,

Sorry to hear that.
I have to knock on wood but since my last big one several weeks ago, no trouble at all. Before I go to sleep and use the ointment I use the eye drops several times in a row. Time will tell wether this proves to have a factual rather than a ritual effect.

Dutch, what type of eyedrops are you using? I use different types during the daytime, but never thought of using them before using the ointment at night - maybe I'll give that a try. I've tried different drops, including Muro, Similasen, Refresh Endura, Refresh Liquigel and a gel recommended by my doctor called GenTeal Gel. I don't know what works the best, but the GenTeal Gel makes the eye feel somewhat better when it is very scratchy.

Hey squirrel. Sorry to hear about the latest. Stupid question, but did you call your doctor?

I've done what dutch has done, using eye drops during the day (a lot), but also really lubricating in the evening before putting in the Miro. Knock wood - seems to be making my eye feel better, not as scratchy or dry.

I went out on a boat today and was on and off the beach - so I've been going thru the eye drops like crazy, hopefully will forestall an attack.

I use Bausch and Lomb single use lubricating eye drops. Of all the ones I've been thru, these seem to be the most comfortable - at least for me.

One last thing - have you ever used a patch at night? Nothing says romance more than going to bed looking like a pirate, but that seems to make me feel more protected, as I have a bad habit of sleeping with my face in the pillow.

Hope you feel better soon! http://www.healthboards.com/ubb/smile.gif

Squirrel,
The drops I use are Hypromellose HPS 0.3%
You probably won't find them in the US, because it is a dutch brand.
I assume some of the brands you mentioned have the same active ingredient, namely methylhydroxypropylcellulose. It thickens the natural eye fluids and avoids dehydration of the cornea.
See: http://www.drugs.com/xq/cfm/pageID_0/htm_202290/type_cons/bn_Hypromellose/micr_medex/qx/index.htm

"prbangel" - I didn't call my doctor because the last time I went she said that unless I wanted to have the stromal puncture done that there really wasn't much else she could do for treatment except tell me to keep lubricating and if she is just doing that she is just taking my money for nothing. I have an appointment mid-June with my regular optometrist for an eye exam so I will ask his opinion then as he was very helpful to me in the beginning of this erosion problem. I have been wearing a silk eye mask at night for the past few months (a full mask that covers both eyes, not just a pirate type patch) and I think it does help somewhat by keeping the eye warm and moist and probably preventing me from blinking as much in my sleep. The only difficulty has been sleeping on my back as I was used to sleeping on my side and the mask doesn't stay in place comfortably when I am on my side (I don't know if I'll be able to continue to use it when we get hot humid weather this summer as it covers the forehead, both eyes, nose and cheeks and I don't want to sweat all night).

"dutch" - you're right, the drops you are using are not available here, but I think just about every drop they have here does contain that methyl...... ingredient (except for the Similasen that I have been trying that is homeopathic).

I have had 3 corneal abrasions over a period of 10 years (2 caused by my daughter and the last was inadvertently self induced during my sleep). The last left me with blurred vision which the opthamologist I visited states occured from poor healing from not being patched. He prescribed Muro 128 5% and it has been 2 weeks and I have not noticed any improvement. I am going to see a corneal specialist tommorrow. My question(s) for you all is have any of you visited a corneal specialist? And I also have another dumb question or maybe 2 dumb questions, I take my Muro drops with me when I can't be home and frequently notice after carrying them with me a chalky like buildup under the cap. I assume this is evaporation of salt from it??? Anyone know what that is and are the drops still as effective. Second dumb question. I have seen that for several of you RCE occured after injury, does anyone know the chances of developing RCE after injury especially after several injuries? The disorder sounds very painful and has me very concerned as I am having enough difficulty just dealing with the vision loss, I can't imagine functioning normally dealing with pain as well. I would also like to say thank you to you all. Reading all of your input has really helped me. I started out tonight very tearful over all the unknowns i.e. medication and treatments of corneal ulceration and now feel more equipped to deal with this. Unbelievable how something like a poke in the eye could have such a profound effect on your life! Thanks

lynnrn, I can answer 1 of your questions - I am seeing a corneal specialist. It just seems that there aren't many treatment options out there that are non-invasive. I had another erosion this morning, after only going 4 days without one and basically don't know what to do at this point. I used the Muro ointment at 3am and at 3:30 awoke with the pain of an erosion. It just doesn't make sense as my eye was certainly well lubricated. There just doesn't seem to be a pattern at all. Let me know what your specialist says. As far as the Muro, I do use Muro 2% during the day (the 5% just burns too much) and never noticed any white residue but it is probably just from the salt.

lynnrn,

Welcome to this thread! From the frequencies of new posters this seems somewhat like an epidemic.

I also visit a cornea specialist.

When at first the accident happened my doctor did not use a cotton-tipped stick after healing (3 weeks). This was because it seemed to have healed nicely.

Several years and (severe) episodes later, another doctor decided to try the cotton-tipped stick procedure. This made my episodes less severe and frequent and -strangely enough- more early in the morning.

I only suffer from blurred vision after an episode.

This chalky built-up must be salt all-right. Nothing to worry about.

On the chances of developing RCE from cornea abrasion injuries I can't help you. For me episodes began several days, to the most weeks, after 'healing' of my injury.

Squirrel,

How are things since your last big one?

Knock on wood, I have had no trouble up till now.

Squirrel,

I am surprised that your doctor hasn't tried the contact lense. I was having minor episodes occasionally when I woke up in the morning for about 9 months. When seeing an opthamologist to have a chalezium removed, I described the symptoms. He recommended Muro. About 5 days later, I had by far my worst episode - lasting the entire morning before I decided I had to leave work to see the doctor. It was debilitating, as I am sure you can imagine. The doctor put in the clear contact lense. I have only had one minor episode sense then - when I think I rubbed my eye while waking up. Otherwise, it has been much better. I would try this before any of the surgical procedures. Good luck.

Squirrel and Dutch01,
Thank you for your input. I visited the specialist. I do not have bad luck (having gotten 3 corneal abrasions over the years) I have some type of genetic abnormality with my corneas, can't remember the name he gave it but may be somehow loosely associated with RCE. The short of it is the top layer of the cornea is not bound tightly so to speak with the basement membrane as a normal persons should be and makes me more inclined to corneal abrasions with simple bumps or even rubbing of the eyes. This sounds like RCE does it not? Anyway, this time it tore right in my line of vision and my vision is blurred. I have several options 1) keratotomy?? 2) TPK or laser surgery which is the only option I wanted to hear about, can't imagine cutting on my eye and the painful healing ,almost can't bear the thought. I am surprised how overwhelmed I feel with this. I know you all can relate. funny how something so little and thin as the cornea can affect your whole life. Like you said Dutch01 it seems almost epidemic, I am surprised not only that so many people are affected by these type of problems but that so many people are so affected by it that they seek a support system like this. How deep! Anyway thanks again for your input.

Dutch, I am glad you have been doing well. I had 3 bad episodes within 3-4 days of each other and was getting very depressed that the frequency was increasing again - just when I thought I was on the way to a full recovery. It has now been 8 days since the last episode and I just have to hope that 8 turns into 80. My eye felt very tired and scratchy last evening and I was almost afraid to go to sleep, but I made it through the night without a problem, although I used both the Muro and Refresh Ointments 3 times during the night.

Eyesore, if my episodes continue, I will have to mention the contact lense to my doctor again. It sure sounds much better than the surgical options, even with the risk of infection. Did you have a hard time getting used to having the lense in your eye 24/7?

Lynnrn, yes, it certainly does sound like RCE, except that yours seem to be less frequent. It really does seem like an epidemic, especially when you stop to think that not everyone with this problem owns a computer and those that do probably don't even know this Board exists. I found the Board by accident one day when I was researching RCE and I am so glad I did as it really does help to know that you are not alone. I wonder if there is something different in the environment that is suddenly causing so many people to have this type of problem.

Bad news for my situation. Today my eye has really been hurting, and it does feel like erosion pain. The only positive thing going for me is that my eye is not red. I'm worried because I read that corneal erosions that occur from tramua to the eye have a high success rate of being healed. However, I do not remember any trauma to my eye which could indicate a corneal disease. The disease angle would explain why all of a sudden I had halo vision, glare, astigmatism, and now ghost vision. The thought of having permanent vision loss depresses me greatly. My experience with these erosions has been pure misery due to the unpredictable nature. You never not what to expect, and treasure the days that your eyes actually feel normal.

Squirrel,

I hardly notice the contact lense. They are designed to go for 2 weeks. I wore the first one for 2 weeks, but I am now changing them weekly. I have had one episode - where I subconsciously rubbed my eye while I was asleep (I woke up rubbing it and immediately knew what I had done). That was in the second week. Since then (going on 5 weeks) I have not had any problems except for occasional blurry vision in that eye. Also, your eye will get extremely dry at night. It seems as though this is related to the contact because it didn't happen before. The trick is to barely pull open the eyelid and apply an eye drop (artificial tears) as soon as you wake up.

Hi all, I found this website tonight after suffering from a recurring corneal errosion sice i was 22 - I accidently hit my eye with a hairbrush. I am now almost 28 and it has been diagnosed, thank god! It took about 2 yrs for my reg doctor to send me to eye specialist as each time i got an appointment it had subsided. Anyway having sat in eye casualty for a day at a time every 3 mths or so for 5 yrs and used articial tears for as long I got a golden ticket to see a specialist - takes that long to see if your faking the swelling, redness, involuntary tears, nose blowing, pain, sensitivity to light etc! Anyway I had some cells removed from my cornea approx 3 yrs ago - very painful but apparently the new cells havent anchored into eye. Next step after consultant is wait another 3 mths !! I have to decide whether I fancy micro punctures - basically a bent needle poked all over eyeball or laser where they will remove quite deep layers in order for it to grow back nicely! Apperently both very sore which I dread as the cell removal left me in agony for 4 days. Anyway if anyone can recommend one over other i'd be glad to know. I totally sympathise with everyone here, happy lubricating!! xx

[This message has been edited by jojoy2002 (edited 05-21-2003).]

"txsongman" - I had also heard about the cure rate being better if the erosion was caused by an injury, which is discouraging because, like you, mine started suddenly for no reason at all. Although, when you think about it, there has to be a reason of some kind, I just wish I knew what it was.
(also see my reply under the other RCE post)

This morning (01.00) had my first noticable small erosion after several weeks. No pain at 08.00. only irritation.

My observation was that those will become more frequent before the big one strikes again.

Beats me what I did wrong this time.

Dutch, I'm sure you did nothing wrong - that is just what seems to happen. Sure wish I knew the reason. That's just what happened to me the last time - little ones then 3 bigs ones within 3-4 days of each other. Hopefully that will not happen to you - try lubricating as much as possible. The inner corner of my eye has been very itchy and red for the past 2 days. I don't know what is causing that, but at least I slept OK last night without any erosion problems. My department at work is moving to another city this week and we will be very busy so I'm just hoping that my eye will remain OK at least for the rest of the week.

just to let you know I had a 3 day espisode at the weekend - due to lack of sleep i think! I was away for the weekend and couldnt make it to my eye doc. Anyway i have been fitted with a bandage contact lens and laser is being recommended - although I have to travel quite a distance for it. My 3month away appointment has been moved forward so hopefully i will be cured. Although no-one replied to me I will update with my findings on laser if they go ahead as i am a nice person!!

[This message has been edited by jojoy2002 (edited 05-28-2003).]

"jojoy" - sorry you felt no one responded - you had asked if anyone could recommend puncture vs. laser and unfortunately I don't know which is better. Actually from what I have heard, neither is very effective. I wish I had an answer as to what would cure this miserable affliction. Meanwhile, welcome to our group - please keep us posted.
"dutch" - after 11 fairly good days, I had a bad erosion at 2:30 this morning (no little ones first this time - I just awoke suddenly with the severe pain that just would let up). At least it is feeling better now - just irritated and scratchy - and I'm exhausted from being awake for a couple of hours in the middle of the night.

Hey guys, sounds like ya'll are doing better than I am. Maybe we need to start our own support group! I had another erosion attack Saturday night. I had mowed my parents yard, but was terrified of dust causing more problems with my eyes. My eyes have some level of discomfort about 80% of the time. However, I'm hoping it's weather/allergy related because both eyes are hurting. I really don't know what to recommend as far as the procedures. I do regret having the puncture procedure done because I now have ghosting vision. Before, it was just blurry vision, and my good eye would offset the bad vision in the other eye. Friday was the worst. I went to Target, and the pain felt just like when you accidently look at the sun. The good news is that yesterday, I noticed improvement in the ghosting vision. It's still there, but I was able to watch Tv without noticing it. This whole thing just doesnt make sense. Why do my cells fall off and other people don't? Why is my layer less sticky or whatever? I am workign on lubricating often ,and will try the genteal thing. However, my eyes feel relief for like 5 secs and then hurt again.

We could start a Worldwide RCE Frustration movement. They fix you up with complete new hips but can not cure our 'little' eye problems...

JoJoy,

I also have no experience with the treatments you mentioned.

3 day episodes I never had. Usually in 24 hours my eye feels much better and I can remove the pad.

I understand your big episodes are fairly far apart like mine (2 to 3 months). My doctor told me a contact lens bandage is no option in that case (apart from other disadvantages).


txsongman
Sounds your condition is constant pain. Indeed that is worse. Did this pain begin after the puncture treatment?

My sitrep: a night without problems, after lubricating like a madman.

Keep up the postings. I suppose we all need to post our frustation away.

Alleluia! This board is a God-send! http://www.healthboards.com/ubb/dance.gif

I thought I was a freak! No one I know has heard of recurrent corneal erosions - I never did until I started having them. It's seems so incredible with such an advance health care system, that there's no definitive fix for this problem. But there isn't.

Mine started 2 1/2 yrs ago from an injury while reading stories to my girls. After a year, it was finally determined that I have map-dot-fingerprint dystrophy and dry-eye syndrome which are the underlying conditions that make recurrance possible. My episodes usually lasts a few days at a time - what fun http://www.healthboards.com/ubb/rolleyes.gif. I went 6 mos once and thought I was home free. I'm currently doing the pirate thing and am finally ready to give the stromal puncture a try. A duct plug was put in a couple weeks ago to try to increase the moisture on the eye. Like everything else tried, it seemed promising at first but hasn't panned out too well.

Like so many others here, I've been through the gamut of ointments, drops and patching. Personally, the Refresh brand of lubricants have helped the most. Also helpful is flax seed oil. I thought it was a bunch of hooey but when I stopped using it, my eye convinced me otherwise http://www.healthboards.com/ubb/wink.gif!

I don't remember who mentioned the numbing drops - tetracaine - but I thank you! I'm going to pester my doctor about that. I've tried to get something, anything before but got the standard line. It's ridiculous that I have sit through an appointment (that won't do anything more than I do at home) for every episode to get any sort of pain relief.

I'm happy to have found this board. It's very helpful to have people who understand this is more than just "allergy eyes" and how debilitating it is.

Rose

Rosed,

Flax seed oil. Interesting did not know that. I have to look up in a dictionary the translation for flax. This can be bought over the counter or on a prescription? You use it only at night or also at daytime?

I have read about this map-dot fingerprint dystrophy being closely related to RCE.

Quite some variation in all our stories. One constant factor being recurrency...

Hi Rosed,

Welcome to the board. I'm sorry to hear that you suffer also, but it's nice to know that I'm not alone in this. I really have not be able to find much info on RCE. All the websites say the same thing, and downplay this disease like it's no big deal. It's a big deal for me because it is so unpredictable. I never know what the next day is going to be like for my eyes. Well, I had another erosion last night which puts me on a 3 day cycle. However, it was minor. My ghosting seemed to improve this morning, but now it's back. Some days, I can stand the sunlight, and some days, it's like a knife right to my eye. Thank God that I bought prescription sunglasses last year. I made an appointment with a new doctor. I think this clinic has a better reputation. Unfortunately, they can't work me in until June 13. I am also keeping a detailed eye journal so maybe I can make some sense out of this.

A RAY OF HOPE!

Dear fellow RCE sufferers: I am very excited to share this good news with you! There may be help for us, after all! Best of all, it is in the form of an eye drop...no invasive surgical procedures!

After doing extensive research, I found out that the FDA is currently sponsoring clinical research trials to test a new drug (in eye drop form) specifically designed to treat recurrent corneal erosion! I spoke with a few people involved with this research, and they said that in the early clinical trials with 137 people, they had excellent results. The eye drop CURED about 90% of the people with RCE! They are now doing a more extensive trial with a larger group of people.

Apparently, the drug is designed to absorb the water in between the layers of the cornea while also promoting faster healing of the cells. This is intended to be a prescription drug...nothing like Muro, which we all know doesn't work.

If the drug has good results in the larger trials, it could be approved for use in the next few years. (I know, you're thinking that you can't wait that long!) Well, apparently, it is possible to take part in one of the ongoing clinical trials. I spoke with the administrator of the clinical trials, and he gave me the name of a doctor in my area who is participating in the trial. I'm going to contact him to see if I can join the study.

The cornea specialists that I've been seeing had no idea about this research or this potential new drug. I told them about it. We should all make our doctors aware of this, so that they don't continue telling people there is no other alternative but surgical procedures that might make our condition worse!

The drug is called DEHYDREX.

I'll let you know when I find out more info.! (Or if there is anyone out there who has already participated in this research, please let me know!)

Hi Dutch and Squirrel and all else!

My episodes are not usually 3 days either as i usually seek help after a few hrs. Anyway I was fitted with a bandage lens on Mon - absolutely brilliant - redness and swelling went within an hr!! Unfortunately I awoke on Tuesday with major pain, swelling watering etc - lens still in but very irratated - it appears it didnt agree with me! Apparantly they are one size fits all so maybe my eye is not 100% normal. Anyway I not only got to see casualty doc but also my consultant was on duty - the top British laser specialist (I am being pushed towards laser - don't know why? - Guinea Pig?)and top Cornea Specialist are at my local hospital in Scotland on Thursday - tomorrow to do a teaching so I have been asked to meet them!! I'll let you know what happens.xx

[This message has been edited by jojoy2002 (edited 05-29-2003).]

Dutch01 - Flax seed oil is available over the counter in just about any health/vitamin section in stores. Definitely available in health food stores. It comes in gelcaps or oil; I like the gelcaps. Normally, I take 2 at bedtime & each is 1000mg. When I get that feeling that a severe episode is coming, I take 3. Flax seed oil provides omega3 acids that seem to be so popular for other conditions. It's not a cure but it helps me.

Txsongman - The unpredictability is just terrible. Today, the pain was less from my current episode. I will also get an erosion during the day with no real warning. Is the ghosting worth the benefit of the stromal puncture? I have an appointment June 8 to arrange the next step in treatment: either stromal puncture or laser.

This condition is a real kick in the pants - I have exceptional vision 20/15; but now I have blurry vision all the time between the drops, ointments, watering and erosions. An eye journal sounds like a good idea to try to see patterns.

[This message has been edited by rosed (edited 05-28-2003).]

Rosed,

Ahh, now I understand. I thought this oil was to be put in your eye. Would have made quite a mess probably.

Suffering w/RCE
Interesting developments those Dehydrex drops. I found references under http://www.dmei.org/CTrials3.asp http://www.upmc.edu/healthmed/services/SeniorServices/eyeresearch.htm

Hi everyone ,thanks for all the info. Yesterday was actually pain free for me. Felt great for a change. I still got the darn ghosting. I have this sinking feeling that I'm stuck with that for life. I watched Dances with Wolves last night ,adn those white letter subtitles would ghost really bad. Honestly, I don't know if the procedure caused it or not because if I close my bad eye, the ghost image still stays. Maybe it's a new effect with my astigmatism that I suddenly developed last year out of the blue. The bandage lens really sucked for me too. My eye did not like it at all, and became really red and irritated. The doc finally gave up on it after just 2 days. That's wonderful news with the test drug. Too bad it takes so long to put it out on the market. All those regulations. One thing is for sure. I will never consider lasik sugery anymore since it increases the risk for erosions. Nothing is worth messing with your cornea.

Hi everyone, I have been keeping a journal since seeing the specialist several months ago and I still can't figure out a pattern to this but I will keep trying. I've been doing OK since my last bad episode on Tuesday morning - but considering this is only Friday I can't get too excited. An RCE support group is a fantastic idea. I actually searched for one on the web, but had no luck finding anything. I have been taking 1 flax seed oil capsule every morning - maybe I should try 2 instead. I hope they can't cause any harm in high amounts.

"suffering w/RCE" - the possibility of Dehydrex getting approved to "cure" us is wonderful - just too bad we have to wait so long. Do you know how I would go about contacting the administrator of the clinical trials to see if any doctors in my area are participating? I sure wouldn't mind being a guinea pig at this point.

[This message has been edited by squirrel2349 (edited 05-30-2003).]

Squirrel, does bright sunlight really hurt your eyes? I swear, I feel like I don't have a cornea left, and that sunlight just burns. I'm trying to look at the positive. My vision is not blurry anymore. Still got the ghost vision. The last two days have been pain free for the most part, but my eyes are burning right now. I'm due for an erosion tonight since it's been 3 days.

txsongman, if the sun is very bright it bothers me as do lights in some stores, especially Home Depot. Some days are worse than others, but the 2 - 3 days after having a bad erosion are the worst. My eyes do burn alot, especially after I get tired in the evening. Hopefully you will have a good night tonight without an erosion.

I accessed the University of Pittsburgh Medical Center web site mentioned above about the new "miracle cure" and sent them an E-Mail asking if any doctors in my area are participating in the clinical trials. They E-Mailed me back with a phone # to call. I called that # and the person who answered didn't know what I was talking about and suggested I talk to someone else. I have been trying to reach that person, but I just get voicemail. Maybe I'll have better luck next week as I imagine they are closed for the weekend. I'll keep you posted.

Squirrel and txsongman, all this time I thought I was just imagining my light sensitivity. It's not actually painful just an uncomfortable/irritated feeling; and I find myself squinting much of the time. I looked to find about any problems with higher doses of flax seed oil and didn't find anything. My opthamologist recommended 2/day (many bottles say 3 or 4). I used to take one in morning & one at night but found better relief taking both at night. It probably depends on each person's particular condition.

Hi all, with reference to light sensitivity - I suffer from it really bad whilst having an apisode the pain makes me wince - to the point that my bad eye is closing so much that my good eye struggles to stay open - driving is alomost impossible. I am being fitted with an oxygen contact on tuesday.

I asked my doc about the miracle drops - he is trying to find out what they are - USA name must be diff from UK.

Hi all, well good and bad news for me. Saturday was a rare day where I felt completely normal with my eyes. No pain at all, and my eyes looked completely white. I was able to go out and enjoy life for a change.


As for the bad news, I had another erosion attack when I woke up Sunday morning ,and stinging the rest of the day. And then I had a more painful attack this morning! Two in a row. So much for establishing a pattern. I can't figure out what I did different on Friday night that worked so good for me. The only good thing about the procedure I had is that even with the attacks, my vision is not blurry in this eye. The vision was never completely nonblurry before. I still have the ghosting vision, but now it only seems to hit when I look at bright lights against dark backgrounds. I'm gonna start trying the flaxseed oil, but I'm just so sick of it all. I'm sick of the first thing that greets me in the morning is seering eye pain.

Hello all... Caught up on everyones messages. Joy - I've had both procedures done - puncture and laser. Laser is actually a piece of cake, just make sure you get pain medication that doesn't make you naucious and get lots of rest for at least 24 hours. I'm sure you've all done lots of research on this problem we share as I have. The pattern that I see is that there is no pattern to the erosions. However, my last attack occurred after a business trip to the very hot dry and arrid climate of Tuscon, AZ - it was very windy and I was outside a bit. As for the flaxseed oil capsules - that's a new one, I've actually been taking it for a couple of years now for different reasons. Maybe that's been helping me and I haven't realized it. TX - I too experience a lot of allergies and have lots of irritation when things are blooming here in FL, which seems constant sometimes! For those who have used the bandage contact - been there, done that. Gives great relief when your eye is healing from an erosion and laser surgery. I was measured for mine so it would fit to my eye. My doctor didn't seem to think that one size fit all. But wearing it was annoying, as I hadn't worn contacts in many years. When I left it alone and quit messing with it, it was a good thing and very protective of my eye.

Well that's been my experience, hope it helps someone. http://www.healthboards.com/ubb/smile.gif

Thanks for that Angel. I have a new contact in now - an oxygen one which is easier on my eye but after having it in for 12 hrs my eye is starting to get scratchy feeling and is watering.

Why have you had both laser and punctures? Didn't either procedure work? I sat in the eye clinic today speaking to an American who had a small lump removed from his eye four mths ago - it wasnt causing a problem just looked bad. Now he is suffering from our syptoms and he can hardly see - stories like that put me off surgery. Wonder if RCE is better of 2 evils. Also they have discovered I have pigment dispersment which is unrelated to RCE but means I have to have pressure checked evry 3 mths as its a sign of glaucoma. I thought only old people got that - not 27 yr olds. Apparently i dont have it yet though as the back of my eyes are healthy - I wonder if they could just flip them round to cure everything at once?!

Originally posted by jojoy2002:
Also they have discovered I have pigment dispersment which is unrelated to RCE but means I have to have pressure checked evry 3 mths as its a sign of glaucoma. I thought only old people got that - not 27 yr olds. Apparently i dont have it yet though as the back of my eyes are healthy

You are not alone! Maybe there is a connection but the doctors haven't figured it out! I too am diagnosed as "glaucoma suspect" which was discovered through the exams for RCE. I'm 38 and there's no history of glaucoma in my family. The doctor says it could just be my "normal" presentation of the back of my eye; but I still have field vision tests every 6 months. My eyes and pressures are fine (except for the RCE of course).

Originally, the doctors were all panicky over the "glaucoma suspect" diagnosis and didn't give the RCE much attention!

Unfortunately, there doesn't seem to be definitive answers regarding the pros and cons of stromal puncture or laser. At this point, I'm ready to give it a go and take my chances.

Squirrel (and others): Well, I signed up for the dehydrex clinical trial. Today is the first day that I'm using the drops. The problem is that I don't know if I'm really using the dehydrex drops or not. Only 67% of the people in the study get the real medication...the others get regular over-the-counter eye drops, so that the researchers can do a comparison of effectiveness. They won't tell you which drops you're getting. (However, if you don't get the real drops during the study, they guarantee to give them to you at the end of the study.)

I'm terrified to go to sleep tonight, not knowing what will happen. So far today, the drops have been fine. They have not caused any irritation. But the study prohibits you from using any other lubricants, so I will not be able to grease up with gel or ointment tonight. I am terrified of another erosion.

I'll let you know what happens. In the meantime, if you want to find out if any doctors in your area are participating in the clinical trial, you can contact the trial administrator, Dr. Szabocsik, at 312-553-0828.

Good luck!

It feels so good I'm not the only one with the same problems.
I screwed up my eye 2 yrs. ago with a piece of cardboard. I didnt know what was about to come. I thought my eye would hurt for a few days and then it would heal and I would be fine. That's when I learned I was screwed since I ended up having to go to the ER since it was so bad.
I went to 4 doctors and they all said there wasnt anything I could do. No surgery or anything. I kept waking up every morning just like most of you at 3-4 am. Certain days it would hurt so bad and be all red. They told me just to use Muro. That wasnt getting me anywhere so I went to a 5th doctor after I had a major outbreak again where my eye was killing me to the point where I wanted to kill myself. This doctor finally helped me out. He patched it up for 3 days and took a week to reheal. He then told me to use Muro and use Refresh PM at night. I did that and it seemed to work, but it didnt last. I still was having problems just not as bad. So I went back. He then gave me Acular in addition to the Muro and Refresh PM. Still had problems. He told me about the puncther procedure and I was going to do it, until I came here and read that a lot of people had it done and either got worse or just still have problems. I guess I'll just keep using the Acular (which does help....the Muro doesnt) and Refresh PM. I still wake up at night, but the pain isnt as bad as it used to be and I havent had a major errosion for awhile now thankfully.
Does anyone notice any difference in their eye during different weather conditions and temps.? I went on vacation to Florida for 2 weeks. I live in Mass. and I had no problems at all while I was down there. I stayed across the street from the ocean so I figure the salt in the air from the water had something to do with it. As soon as I came home I would wake up in the middle of the morning. I seem to not have as many problems when its hot out. If its raining I do. I have more problems in the cold winter months. Mainly Jan-Feb. Thats when I seem to have major problems. I'm thinking of moving to a warmer climate.
Anyways I'm so glad I found this forum. It's good to talk with other people and read your posts. I've actually learned so much more here.

[This message has been edited by NateTrain (edited 06-04-2003).]

"Suffering w/RCE" How did you participate? Did you just call that number you posted and they told you of a doctor involved in the study? I might do it myself. What do I tell them and ask them? Keep us posted for sure on results. I hope it works.




[This message has been edited by NateTrain (edited 06-04-2003).]

Hi Nate. Welcome to the board. I think this thread has kinda turned into a support group which is fine with me because I can't think of many eye problems that are worse than RCE.

My condition has me severely depressed at this point. I has slim hopes that my frequency of attacks was decreasing, but I had probably my worst attack last night. I spent 30 minutes this morning with pain that felt just like hot needles stuck in my eye. The cells must have got totally wacked out this time because the vision is completely blurry, and the light distortion is worse than ever. My erosions have never been this bad. When I started going to the doctor back in Jan, I wasn't even having pain but maybe once a month! Now, I think the puncture just made things all the more unstable. I can't see where the muro helps me one bit especially since I'm having attacks now every 2 or 3 nights. I probably spent 200 dollars of my money on office visits and for what. To make my suffering even worse. I have zero faith in the medical community.

txsongman, Have you tried using Acular? Muro didnt help me at all either, but after the doctor gave me the Acular it helped a lot more. If I wake up at night with pain I'll put a few drops in and then put more Refresh PM in and within 10 mintues I'm sleeping again. If I used Muro I'd be up all of the time. Sometimes I think the Muro made me worse. If you havent tried Acular though I would. It's worth a shot. It's not over the counter so you'd have to get it from your doctor.

"natetrain" - welcome! You mentioned you are using Acular. Is that a drop or ointment? Prescription? I'm always looking for a new solution to this problem.

I thought of trying to enter the clinical trials for Dehydrex, but I would need to be certain that that is the medication I was getting (and I guess that is not the case in clinical trials). I certainly don't want to make matters worse by them giving me only a normal tears drop which I already know does not work. At least the greasiness of the ointment seems to help somewhat. I guess we can just hope for the FDA to quickly approve the Dehydrex - anyone know how we can find out when that will be? The only thing I found on a website was that the drug was developed back in 1990 - I don't know how long they have actually been testing it but the FDA committed over $300,000 to clinical trials for it in 2002.

Meanwhile, I awoke several times last night where my eye felt scratchy. I kept putting in more Muro ointment and luckily made it through the night without an erosion.

I can't seem to find a definite relationship between the weather and having an erosion, although it would make sense that if the air is dry it could dry out the eye more.

"txsongman" - I'm sorry to hear that your RCE has been worse - especially after going through a procedure that was supposed to help. Doctors just don't seem to undertand the amount of pain an erosion can cause someone. Although I probably wouldn't have believed it myself if I hadn't experienced it (over & over again!)

It is great that we have this "support group" going - it does help. Since the FDA committed so much money to do research on a cure, there must be a awful lot of other people out there with the same problem as us.

Hi Nate,

Actually I do have some acular! The doc prescribed it after my procedure. He told me to use it a few days and then stop. Maybe I should have kept using it. I thought it was an antibiotic or something. I do have some left. They put those drops in the tiniest little bottles though.

Squirrel, it would be comforting to me if a large number of people are having this problem. I feel like I'm in the minority. I read that the puncture procedure has a 85% success rate. One thing thing is for sure, I'm glad that I never opted to get Lasik surgery done! My family pressed me for years to get it done, but I was a bit leary despite all the success stories. Now, I hear that it can cause RCE and night vision problems, no way. The cornea is just so fragile that if it is just bent at the smallest angle, it can really distort your vision. I'm afraid that my ghost vision is permanent. I have not seen one bit of variation since it start which tells me that it's not caused by the moving cells. Something permanent is screwed up.

I have been using the therapeutic contact lens since 4/22. I have had one minor occurrence since then - when I rubbed my eye in my sleep. I highly recommend the lense. My doctor is hopeful that my eye will heal with the protection of this lens within a couple of months. With all that I have read, I am not so sure if there is such a thing as complete healing. But the lens has at least alleviated the condition.

A drawback is that my vision is blurry. I am not sure if that is caused by the lens or the damage to my eye. I had 20/15 vision in that eye up until I had my most serious occurrence, after which the lens was inserted. Also, my eye is EXTREMELY dry when I wake up. In fact, if I don't carefully open it with my fingers and douse it with Refresh Tears, it feels as though the wound is on brink of opening back up. Is the dryness caused by the RCE or is it caused by the lens?

I found out in a private conversation with the doctor's assistant that my RCE was by far the worst he had ever seen. That makes me wonder just how much he knows about the condition. In any case, I am thankful that he went to the lens rather than a more intrusive procedure, as it has made my life much more comfortable (at least for the time being).

"NateTrain" - Yes, you just call the number I posted and ask for the name of the closest doctor who is participating in the dehydrex clinical trial.

Last night was my first night on the drops. It was horrible. My eye ripped open only two hours after I went to sleep. The pain was excruciating. I couldn't go back to sleep all night. The doctor tells me not to be discouraged...he says it can take up to a week before the drug starts working (that's assuming that I got the real drug - it could be the "control" drug instead). I don't know if I can bear this for an entire week. The hard part is that you can't use any lubricants during the night.

Normally, I use Genteal Gel every hour during the night. That is the only way I can stop the abrasion from ripping open. Without applying that gel every hour, I am doomed.

I will see what happens tonight, now that I've had two full days of drops.

"NateTrain" - Yes, you just call the number I posted and ask for the name of the closest doctor who is participating in the dehydrex clinical trial.

Last night was my first night on the drops. It was horrible. My eye ripped open only two hours after I went to sleep. The pain was excruciating. I couldn't go back to sleep all night. The doctor tells me not to be discouraged...he says it can take up to a week before the drug starts working (that's assuming that I got the real drug - it could be the "control" drug instead). I don't know if I can bear this for an entire week. The hard part is that you can't use any lubricants during the night.

Normally, I use Genteal Gel every hour during the night. That is the only way I can stop the abrasion from ripping open. Without applying that gel every hour, I am doomed.

I will see what happens tonight, now that I've had two full days of drops.

Eyesore, that's great that the lens is working for you. In my case, the doctor put it on me, and my eye was all red and in severe pain the next day. I saw the doctor 3 times that week. Maybe they just did not fit it right, but at that point, he said lets just do the stromal procedure and I was ready. I hope my posts hasn't completely scared everyone off from trying the other treatments. I'm probably just one of those rare cases that is totally screwed. I read today about the risks of Lasik. Even though they list the percentage of complications at 1%, the long list sounded very scary. Even permanent vision loss is a possibility. The thing with surgery is that everyone's body is different so they can't predict 100% what will happen.

Wow! So much stuff to read. I'm grateful to have this board. It helps just knowing someone else understands the anxiety and pain of this condition.

Suffering w/RCE, you will be in my thoughts as you try this new drug. I can imagine the anxiety of not knowing what you're getting and being without your ointments. Yikes!

Txsongman, sorry to hear of yet another episode. Your experience has given me pause about getting stromal puncture. After much consideration though, I'm still going ahead and will let you all know how it goes.

So far of all the ointments and drops I've used, Refresh LiquiGel and/or Celluvisc during the day has given the most consistent relief. These "crust" up on my eyelashes which terribly attractive (note the dripping sarcasm!). But it's better than the pain.

Flax seed oil capsules and Refresh PM ointment are my nighttime choices with Celluvisc by the bed. Since my duct is plugged I can now wear a patch at night again. Before my duct was plugged, wearing a nighttime patch seemed to cause me to get bronchitis alot (every couple of weeks or so) from stuff draining into my sinuses and down. Once I stopped the patch, the bronchitis stopped.

We should become stockholders in all the drop and ointment companies!

Rosed,

I wish you well with the procedure. When are you having it done? At least mine staved off the erosions for 3 weeks. I still can't believe that they started back. I feel like I'm part of some horror movie that won't end. "it's baaaackkk". I think my last episode was a massive erosion because it is still trying to heal. My vision was awful last night. I was almost scared to drive. Today, it has improved. As for ointments, I put it in, and sleep for 8 hours. Maybe I should try waking up several times and putting the ointment back in. I have found more info on this board than anywhere else. I tried another website search for corneal erosion treatment, and it brought up sites about treating your dog for this condition!

jojoy... you asked why I had both procedures. I had both, because the puncture is recommended by the medical profession as the starting point. Then when that didn't work for me (I've heard it works for some people), the next step was the laser surgery.

From everything that I've read on this site, it sounds like I'm up there with several people on the severity of the erosions - when I have one, I'm out of circulation and on the sofa in a dark room for 24 hours. However, it also sounds like I'm a bit more fortunate on the procedures and how they have turned out. I live in southwest Florida where it's always rather humid, not sure if that has a whole lot to do with it, but the trip to AZ a few months ago did bring on an erosion after I got home.

I've been trying to be vigilant on keeping eye drops handy and put them in whenever my eye starts to feel dry. Also the Muro drops (5%) seem to be working for me - they give me relief when my eye starts feeling uncomfortable, like there's something in it. Which I equate to post-erosion timing when the eye is healing, but still feels like something is in it. The lense did help me a great deal - I went thru probably about 3-4 of them in a 4 month time frame. My doctor recommended leaving it in 24/7.

He was astounded when I developed an erosion under the contact lense. So we all seem to have those moments of complete confusion from the medical eye world.

But in all of this, I have learned that my eye doctor really does know when he's doing. I've researched everything that's he's told me and from what I've found, he's been correct. I've found articles that back up all of his opinions. I've found comfort in this - and have been able to keep my mental state a little bit more stable. This is a very uncertain condition and there's still lots that the medical profession doesn't know. I continue to knock on wood every day that my eye feels good. My vision is not perfect and since the initial problem began, almost a year ago - my vision in both eyes has deteriorated. My right because of the initial injury and following RCE's and my left because it's had to compensate.

It's not a perfect world - but I guess we all have to find our own ways to cope.

OK - I'm off my soap box! Promise not to visit there again. It's really great that we've all found this board to vent our frustrations to. Thanx for listening! http://www.healthboards.com/ubb/smile.gif

Txsongman, I'm having it done Monday.

prbangel, I too am finding more trust in my doc. He doesn't push escalating treatment. He offers options and lets it be. It took months for me to decide to get the duct plugs! I just was denying that this was here to stay. I'm getting more "settled" with the permanence of this condition and the daily effort required. It ain't fun; but I have to try to not let it suck the fun out of my life. It is what it is.

I'M off the soapbox, now http://www.healthboards.com/ubb/wink.gif

joyjoy, I hope this will help. I just had my TPK laser surgery done last friday. It really was not bad at all. I even felt I was at a disadvantage because out of ignorance I walked in there thinking I would be getting the same laser surgery as the average joe would to correct the vision to get rid of glasses (known as lasik surgery). This was a bit more extensive, before he lasered the eye he numbed it up very well then applied this type of gel so I couldn't see it coming then he scraped off the scarred tissue of the cornea and finally lasered to smooth and reshape. He then put in a bandage lense and sent me with aspirin type drops, anti-inflamatory drops, antibiotic drops and of coarse Refresh Plus moisterising drops and I am pleased to say my vision on my check-up yesterday is 20/25!! The pain was not even as bad as the pain of an erosion I would say and I did not take any pain medicine besides the valium they had me take pre-op and 2 motrin that eve. for a headache. Mostly I was very, very light sensitive for 3 days, that caused major eye watering and a poked in the eye kind of pain but never was it too uncomfortable. I went back to work 2 days after I had it done. It may be too soon to tell, I haven't even gotten the bandage lense out yet but so far so good! I would say of all the treatments I have read or heard about this seems to be the best.

Well, after 11 decent days I had another erosion at 4:30 this morning. Still can't figure out any type of pattern, but it can't be the lack of humidity as it has been raining for well over a week and it poured all last night. I did get an eyelash in my eye yesterday afternoon, so maybe that set it off. I spoke with the Dehydrex Trial Administrator and he gave me quite a bit of information on this drug. He did say it will probably be at least 2 years until FDA approval and that they are in step 3 of the trials. He said 1 of the problems they are having is that there are not enough people with this problem to participate in the studies. I told him I got his tel # from a healthboard on the internet and that there seems to be an awful lot of people out there with the problem. The real problem may be that there are only 10 doctors participating in the trials right now, but they hope to increase that to 50. There is a doctor participating that is about 50 miles from me and I would be willing to go if I was guaranteed the Dehydrex, but he said they can't guaranty that - only 2/3 of the people in the study get Dehydrex, the others get a regular eyedrop. He said that it is an 8 week study and that you have to guaranty to them that you will not use any other type of eye medication for the 8 weeks, whether or not you are having erosions. After 8 weeks, if you were given the Dehydrex and it is working, you are tapered off the drug over 5 months. The drug they give you is taken 5 times/day and you have to keep a log. He said Dehydrex supposedly works by drying the water that builds up under the Epithelium thereby allowing it to adhere better (similar to what Muro is supposed to do). Of course not everyone is admitted into the study, so even if I decide to go for it I am not guaranteed to be accepted. You have to fill out a 16 page health questionnaire and be examined. One of the reasons you can be rejected is if they determine that your eye is too dry and mine is definitely dry. I basically don't know what to do at this point (maybe just hope for a miracle!!!!) http://www.healthboards.com/ubb/frown.gif

Hi folks thanks for all the replies about the different procedures.
My oxygen contact lens is fine and I can't feel it or hardly see it in mirror, thats been a week, the only problem is I keep having 5 min episodes when its really sore and watery, I think the edge of the lens is rubbing into the errosion maybe?
Anyway thats all I have to report just now and after all this typing i will not be happy if I am still a 'newbie'.

Hello, everybody! It has been so heartening to read all these messages and know that there are others out there going through the same thing.

Last March my then 9-month-old baby girl whacked me in the eye with her fingernail; I never saw it coming. I was patched that night and went a couple of weeks with no problems, then...whammo! One morning I woke up around 4:30 a.m. with that old stinging pain, feeling the surface of my eye RRRIP! After that, the pain kept coming back every few nights.

I finally found a doctor who understood the problem three weeks ago, and I've been doing Muro 5% drops during the day and Muro ointment at night. I was thrilled to be able to go 16 days (!!!) without any problems, and was just starting to feel like, hey, it's over, hurray, when this morning everything fell apart. I woke up at 4:30 a.m. with a definite rip, then at 5:30, 6:30, and 8:00 (when I gave up trying to sleep and got up for the day). I just got up from a nap of about an hour, and I felt RIP again! I'm terrified of going to sleep tonight because I'm afraid I'll just be up every hour, and no matter what I put on the damn eye it doesn't seem to make any difference. Has anybody else had this kind of repeated erosion, hour after hour? I'm pretty sad.

I guess the next step is to try a contact lens? Any thoughts would be appreciated. And good luck to those on the board undergoing new therapies soon!

Best to all, Melissa

txsongman - Your right on the Acular. It is in the smallest bottles. Expensive stuff as well. I have to pay $20 for a 5 ml bottle. It's actually like $55.80, but my insurance covers $35 of it. Luckily the doctor gives me 2 samples to go along with it. It's actually used for people who have allergy problems who have that burning eye, but I'll tell ya I stopped using muro and am sticking to the Acular and Refrsh PM and I'm doing better then when I was using the Muro.
The reason the doctor wanted you to stop after so long and he only wants me to use mine once a day is because there could be side effects where it can tear your eye. I only use it if I wake up at night/morning but it works so I'm sticking with it until it doesnt work anymore which I hope is never.

squirrel - Acular is a drop and is a prescription. Not cheap at all, but worth it if it works for you. Ask your doctor for a couple sample bottles and give it a shot. Never know, it might work for you like it is for me.

Melissa,

Your injury sounds similar to mine, although mine probably wasn't as serious initially. I think I got scratched by my then 3-month old last summer. I don't remember for sure because it was not tramatic at the time. But for about the next six months, my eye would sting when I woke up in the morning about two or three days a week. I didn't seek treatment because the pain always went away by the time I left for work. Then a couple of months ago, it started waking me up in the middle of the night. I went to the eye doctor and he explained what was happening and put me on Muro. Less than a week later, I had my worst occurrence, where the pain (not to mention the river of tears) was incapacitating all morning long. I went back to the doctor, and the next step was the bandage contact lens. I have been using it for probably about 45 days, and I have not had any serious problems. It does seem to really dry out my eye at night; and I have to be very careful in how I open my eye and make sure I quickly get a drop in it. Otherwise, I can feel it as though it is about to rip open.

I highly recommend the bandage contact lens. I won't find out for several more weeks if the eye is truly healing or if the contact is just protecting the wound. But it seems to be better than the more intrusive alternatives, which apparently sometimes make things worse.

Good luck!

Hi everyone,

Well, I survived the weekend without an erosion. It's been 4 days which is a new record. The blurry vision has gone away, and I can see clearly in my erosion eye. However, the ghosting vision is getting worse which scares the hell out of me. Even looking at my white notepad, I see a little ghosting. I drove late at night on Saturday, and I was shocked to see how bad the night vision has deterioted. I saw halos around the streetlight there was so big that they touched the ground. I just don't understand this. Before the erosion pain, I got off work one night, and suddenly noticed halos around lights. It doesn't make sense that your vision would just suddenly change and go bad rapidly like that. I can live with the erosion pain, but the vision loss is really depressing me.

"melstein" - I have had frequent erosions like you at times - luckily not for awhile however. I've had days where I would wake up at say 3am with an erosion and after getting that under control in about a hour I would fall back asleep and awake again at say 5am with another one, etc. Single ones are bad enough, but multiple ones in 1 day are unbearable - seems to take days to get back to normal after that.

"suffering w/RCE" - how are you doing? Hopefully you are doing better with your new "medication" and not still having bad erosions.

My eye still feels very irritated from Sunday morning's erosion and I seem to be more light sensitive this time than ever before. I'm also exhausted from lack of sleep as I had a terrible time falling asleep last night and then awoke several times during the night - afraid to open my eye for fear of another erosion. Hopefully I'll have a good night tonight.