Here is an update on progress related to RCE -
I have eliminated the use of MURO 128 5% ointment at night and used the REFRESH artificial tears, instead. I did this 2 weeks ago and have had good results - I have had several "stuck" eyelid episodes, but by carefully applying the artificial tears before opening my eye - I am able to safely lubricate and open my eye. I have been using the Muro ointment for over 1 year - it is definitely a hassle and much messier than the artificial tears. I should also point out that my eye feels better during the day since I have not been using the Muro ointment.

What all this means is that perhaps I have reached a milestone in the healing of this corneal erosion. I think it is still needing more time to heal - but it is definitely improved from a year ago. I followed the regimen of using the Muro ointment and the use of artificial tears at night (being careful NOT to open my eye)when my eyelid would be stuck to the eye for the more than one year. During this time, I recorded all the erosions - there were NO severe erosions - there were a dozen or so mild ones and a handful of medium-level erosions. These would ususally uccur when I failed to keep my eye still and closed when I awoke with the eyelid stuck to the eye. None of the mild erosions that I experienced using the Muro ointment + artificial tears regimen (keeping eye closed until unstuck) were painful - I record these because I feel a sensation on the surface of the cornea and know there was some disturbance of the epithelial cells.

I hope all of our RCE sufferers are doing well and keeping erosion free.

Best Regards,
Janet

Hi Janet, I've had better luck using Genteal Gel at night instead of the Muro Ointment. I think the fact that it makes my lashes stick together helps to keep my eye shut. Most of my bad erosions have happened while I was still asleep and it was the pain that woke me up. The Muro just made the lashes greasy and didn't make them stick together. Refresh Celluvisc works pretty good too, but I really like the consistency of the Gel. When I awaken during the night I put drops in the corner until the eye feels wet and saturated and then gently rub the crusty stuff off the lashes before putting in more of the Gel. I too am far from being cured but at least the frequency has diminished. I was getting erosions almost every day. I recently went 3 weeks and now it has been a week. That certainly isn't very long but much better than it was.

This is something I noticed too - though it was with Muro, that using something that makes your eyelashes stick together seems to help your eye stay closed. (I still wear a mask though) Personally, the Muro does work well for me. I do use Genteal at least once during the day, and I do try to wake once at night and apply Refresh drops.

Squirell do you feel Genteal will get you all the way through the night?

Hi JaneNY -

Though I no longer have erosions (PTK), I do still have dry eyes and have been using Genteal Gel for years to combat it. At least as far as dry eyes are concerned, it usually gets me through the night. It didn't stop my erosions, but it helped. I never use the Gel during the day because it is too thick for me and takes too long for my vision to clear.

ebmd.

One application of Genteal wouldn't get me through the night but I routinely wake up every couple of hours and I reapply it each time I awaken (after using drops in the corner and gently rubbing the crusty stuff off my lashes). In the beginning, the Muro seemed to help but I think I probably became immune to it over time. I also run a humidifier all night since the air is so dry this time of year.

Janet - me too; I no longer user any ointments. All I use now are the Refresh tears upon awakening. All is well.

Best always,
Mike

Hello Everyone:

Time for me to get back on the Board again! I've been doing pretty well over the Winter with my RCE. Erosions were very minimal. I wasn't even sure if I was having them. I've had several episodes over the past few days, awoke with a burning and soreness until I got my tears in. This morning I knew I had one, more pain and redness and irritation and tearing. Just when you think you're out of the woods, RCE gives you a reminder call. Does anyone know if Stress is a contributing factor? This has been a VERY stressful year for me. I have also been taking Tylenol PM (only 1 Tab). It helps me sleep, since I don't want to take any prescription sleep aids. I also cut down my Muro drops during the day and was doing fine.

I'm looking forward to the warmer more humid weather in NY!!

Stay RCE free.

Anninalbany

Hi All,
Ann - hope your recent flare up calms down and you can get back into the erosion-free mode.
Mike - good to hear that you are erosion free.
I have been erosion free over a month now. Actually, I have only had a couple minor "incidents" since late January. The artificial tears are doing the job. Also, my eyes are not so dry because the humidity has picked up.

Ann, like you say, though, these erosions are pesty; one cannot let your guard down.

Best to you all!

We all know many things that help including adding artificial tears before opening one's eyes in the morning, doxycycline, PTK, flaxseed oil, staying hydrated drinking plenty of water, dehydrex?, etc.

Since we know 95% of all erosions happen upon awakening when moving one's eyelies explains why getting artificial tears in right before moving the eyelids helps. But, here's another thing that I do believe helps a lot: since the eyes will really dry out a lot if you sleep with your eyes even slightly open (which many don't even realize they do), try to find ways to keep your eyes closed at night. This may include avoiding sleeping on your back at all times (at the very least tilt your head to one side), use an eye mask or what I do is gently squeeze my eyelids tightly shut a few times before going to sleep (I think it helps subconsciously to reinforce how I want my eyelids closed all night before drifting off). Also, sleep in a position so your eyes are less likely to open when you are asleep. I position the pillow is such a way so that it slightly and gently presses the top of my forehead down to assist in keeping my eyes shut.

Stay erosion free all,
Mike

Janet,
I wish you luck and hope that you have patience. I totally recovered from RCE about five years ago and can wear contacts(with punctal plugs). I had a Dr. in the Albany area who could not diagnose my problem. I insisted that he refer me to a cornea specialist who identified the problem in about five seconds. Erosions take a long time to heal. Unfortunately we don't have blood vessels feeding the cornea, which would definately help, though we would look pretty scary! I was on Muro 128 for at least a year. I loved that stuff.
I can remember how concerned I was when I was told I could stop using it! I would open my eyes so slowly.

Keep the faith, and good luck.

Brad

One more thing,
It was the punctal plugs that really turned things around for me. I have the lower ones and the uppers can also be plugged. They can put collagen plugs in to see if they help, which dissolve in about a week.

Brad

Muro 128:

How long did you have your RCE and how long did it take you to heal? What treatments did you use? Were you treated in the Albany, NY area? I've been seeing a Corneal Specialist for 2 1/2 years now. Do you have Dry eye? Do you still use ointment at night? Thanks for sharing your experiences.

Anninalbany

Ann,
It all started with the burning sensation when I opened my eyes in the morning because of parts of my cornea were sticking to my eyelid. I'll never forget it. It was so long ago, I know it was over a year that I was using Muro 128 ointment every night, maybe 15 months. That was my only treatment by my Albany area doctor. My mistake was not going to the eye doctor right away. I had the burning sensation upon waking several times before I had it checked. I probably recovered in a year and a half. I used lubricating drops for a few months after the Muro usage stopped just in case. My doctor told me that I was 100% healed. I asked about wearing contact lenses. He suggested that I wait one additional year.

A year passed and I got contacts. A test was never done to check for the proper eye moisture (i know that's not what it's called). I got corneal abrasions after my lenses were in for a day of two, several times. I went back to the same eye Dr. who handled my RCE. He had no clue why I was having problems with the contacts. I then went to a cornea specialist (I'm not sure if we can mention Dr. names) at the Lions Eye Institute in Albany. The Dr. determined in seconds that I did not have enough moisture to wear contacts by using the tape they place between your eye and lid. He suggested the Punctal plugs and I agreed to it. The collegin plugs were put in to see if it helped. I instantly noticed the difference and went back for the permanant ones (which can be removed). I was told that my abrasions from the contacts was entirely different than the RCE, which was very good news!!! and that I had recovered totally from RCE. I was never told that I had "dry eye". I highly recommend the Lions eye Inst. The Dr. at Lions told me that the dryness also had a role in the RCE.

Currently I do not use anything other than rewetting drops occasionally for my contacts. I do have the plugs in my lower eyelids.

Good luck Ann, and please be patient.
The cornea is an amazing thing. I did a lot of research on the internet about it. When we get an injury to our cornea, cells immediately rush to the area to protect it. I've confirmed this. If you get a abrasion, just close your eyes for a minute and you'll get quick relief. Hope I havn't rambled too much.

Brad

Brad:

Thanks very much. Your post was very helpful. I too am being following by one of the Cornea Docs associated with the Lions Eye Institute. We are very lucky to have good Eye Physicians in this area. I had permanent plugs put in over a year ago. They had both my upper and lower ducts plugged but my eyes were constantly tearing and irritated. The plug in my right eye started to come out and protrude, so I had it removed because it was starting to scratch my cornea.

I tend to do much better during the warmer weather. I can go the entire Summer without any problems. The hardest part of this condition for me was the sleep deprivation. I can now sleep through the night. Sometimes the burning will wake me out of a deep sleep, but I know how to manage it now. I tried to emphasize to my Dr. that it was a serious Quality of Life issue for me. I'm just hoping someday, my erosions will just stop!!

Ann

Hi All!
Yes, Ann --- we all hope that these erosions end and we have healed completely. Yet, they lurk in the background --- last night I had a mild erosion after over 1 month with no problems. Fortunately, it was very mild -- I took corrective action - but yet it puts me back on the healing track.

Interestingly, my lower tear duct was injured (from a car accident) ...lost draining and I had an artificial Jones tube inserted 3 years ago...I am sure now that this contributes to the dryness .. prior to the tube insertion -- I never had any erosions. I could have the tube removed -- the tear duct would heal and scar and become stopped again. I am not yet ready to do that.

Best wishes to you all,
Janet

Hi all- Janet that's what's on my mind - that erosions still lurk. I've gone months without a significant one, and I'm doing nothing at all now, except using (well-warmed) Muro 128 ointment once before bed, and I sleep with an eyemask to help keep my eyes closed. I'm wondering when and if I'll dare giving up the 128. There hasn't been a night I went without it since the summer of 04, at this point.

Hello All:

I've noticed that the frequency of my erosions have increased since the end of March and especially April. I have been having episodes almost every other day. I was doing pretty well over the Winter, only about 1 per month. I am almost Post-menopausal. Does anyone know if hormones aggravate this condition? I'm wondering was the next course of action will be for me? Has anyone just used the Doxycycline with any success?

Anninalbany

Ann, mine was worse in the summer - my thought was because I frequently found myself sleeping on my back by the morning.

Also, I said above I do nothing but Muro, but I forgot that I do take doxycycline every day - go to the doxycycline thread to read a little more. I posted there.

All,
The question about hormones and how this may relate to RCE is interesting. Recently, I saw a report on a research study about testosterone eye drops alleviating dry eye problems. Certainly, there could be hormonal relationships.

Although postmenopausal, I do not take HRT.

I send you all very best wishes,
Janet

Thanks Janet. I know what you are referring to as far as hormonal drops are concerned. They are called Androgen drops and are still in the development stage. I am still awaiting the FDA approval of Dehydrex with baited breath! I hope it's the magic bullet we are all looking for.....

Stay well and erosion free everyone!

Anninalbany :bouncing:

Hi, I've just been diagnosed with RCE after 2 months of excruciating pain. I've already been on doxycycline for 2 weeks, but I am curious about steroids: which drug in particular, what dose, and for how long it is used?
Thanks.

Jenya - another thing that works wonders if you have not read our prior threads is to learn to awaken with your eyes closed, still and relaxed. Add artificial tears into the corner of your eyes before moving your eyelids. I have avoided erosions for almost two years now by doing this. You'll also start to learn to feel when your eyes are more dry in the morning and when you must apply the artificial tears to avoid having your eyelid slough off cells on the surface of your eye.

Best always,
Mike

This thread was closed last time when it got too long - I really missed the contact and support that we gave each other on this topic. Can we plan to start a new thread when one gets up to a certain number of pages?

Mike do you still use warmed Muro at before bed? I'm wondering if I can/should start tapering off (maybe by reducing the amount - I use pretty much on application) or should I use it for the rest of my life....I haven't had a significant erosion since last August, though I do have summer to get through, still.

Jenya - so sorry! We all understand how agonizing it is. I do the same thing as Mike - I also sleep with a cloth eye mask on - it helps me keep my eyes completely closed, and not have them pop open when I wake.

Jenya:

If you have access to a medical library or do a search, there is a small, documented study by Dr. D. Dursun in the June 2001, American Journal of Opthalmology, "Treatment of Recalcitrant Recurrent Corneal Erosions", etc. The treatment is Doxy 50 mg. twice a day accompanied by a topical steriod; they mention 3 types. The mildest one with the least side effects is Fluoromethalone 0.1%, 3 times a day for 2-3 weeks. Your Eye Doc may want to monitor your pressures over the few weeks you are on the steroid.

Best of Luck!

Anninalbany

Hi Jane - My routine has been pretty standard for the last several months. I have not used any ointment at all before bed. I only apply drops before opening my eyes in the morning or when awakening. As you'll probably agree, when done right it can stop erosions dead in their tracks. The only time I now would use ointment is if my eyes don't feel right during the day (you know the posts where people say their eyes feel "picky" and stuff). I would just warm the ointment tube under warm/hot water and apply it. I think Muro is great for that but otherwise, I no longer use it. I'm only using Refresh tears every time I awaken before I open my eyes and everything is great.

Stay erosion free all,
Mike

All,
Hope you are all doing well in avoiding any erosions. Mike's advise to avoid opening (or moving) your eyes when awakening is very critical to success. Staying relaxed and avoiding any movement when you notice that your eyelid may be stuck to the cornea is the key - and then to insert artificial tears into the corner of your eye -- flooding the eye and gradually becoming loosened.

I am still doing well - been off the MURO ointment for a few months now and having minimal problems, by using the artificial tears.

Best wishes,
Janet

Hi,

I have been suffering with RCE for 2.5 years now. I was very glad to see that there is a forum for others with this very frustrating problem. I have been through drops, ointments, contacts to no avail. My eye doctor finally said he couldn't help anymore and referred me to a cornea specialist. He performed the stromal Puncture procedure on my left eye ( I unfortunately suffer in both eyes ). It has taken a while to settle but I have been keeping track of attacks ( or erosions ) and approx. 80% of the attacks ocurr in the right eye now. So, I have been seriously considering the procedure in the right eye. I am hesitant since it is my only "good" eye left. Any advice would be greatly appreciated. Also, I read about others being able to control the opening of their eyelids at night. I cannot seem to control this. I open my eyes automatically. How have you trained yourself to not open your eyes upon awakening? Also, I have read of other treatments such as flaxseed oil and others. What has worked the best for you other sufferers out there? Also, has anyone had success with reducing sensitivity to light after attacks? If so, how? Thanks in advance for any help.

Grant

Grant,
I too had trouble keeping my eye closed upon awakening but then I discovered if I use Genteal Gel before bed and each time I awaken in the night, it forms a crust on my lashes which tends to help weld the lids shut - not a 100% solution but it sure has helped alot. Best of luck to you. I know exactly what you are going through. As far as the light sensitivity, the only solution I have found is wearing sunglasses when it gets really bad.

Have youguys tried the serum drops? Most likley it will help your condition

sk11,

What are these serum drops?

Grant

gkinfw - you can train yourself to keep your eyes closed upon awakening and add artificial tears in the corners of your eyes before opening. Be sure to sleep in the same position each night side or stomach and never the back.

Also - have you tried doxycycline? Also, many have reported great success with a doxycycline (6 weeks) / prednisone (1-2 week) combo. Otherwise, you could check into the Dehydrex trial studies.

Mike

Mike1961,

Could you be more specific on how to use the doxycycline/prednisone combination ( eg 1 pill/day, 2/day, drop of prednisone b4 bed, etc )? I would appreciate it. I took one doxycycline pill one night and had the worst attacks I've had in some time in both eyes. However, after that, I had no attacks for at least a week ( which is good for me ). I think there was some success here but stopped taking it because of the severe attacks that night.

gkinfw

gkinfw - one of the best ways to avoid erosions is to be sure to add artificial tears right before moving or opening your eyes in the morning. Also, if your eyes don't feel "right" after awakening, consider warming Muro ointment under warm water and then applying some to your eye(s).

Regarding cures, the best methods that I have heard are (and not necessarily in this order):

1. Doxycycline by itself can be very effective in that it "kills" the cells that don't adhere well (which could explain why you had some erosion right after taking it). It also inhibits the MMP activity which in turn promotes good surface adhesion.

You can do a search on doxycycline and occular surface repair for more info. Regarding the dosage, I have read articles saying the doxy should be taken 100 mg a day for 6 weeks and the prednisone for no more than 1-2 weeks but you can do a search on that as well. The doxy/prednisone treatment has been documented to be about 90% effective which is pretty good considering it avoids surgery. But, many docs are hesitant to prescribe a steroid due to a potential to increase eye pressure. You can do a search on doxycycline, prednisone and erosion for more info on that.

2. Dehydrex drops - trial studies look promising.

3. PTK 90-99% cure rate.

There are other things that can be done but as always check with your doctor and if you have doubts, get a second, third or even fourth opinion.

Mike

Hello everyone,

First, thank you to all the forum participants for sharing such useful information about RCE -- it's been extremely helpful to me and I'm sure to the many other "lurkers" out there.

Here's my situation. Last October I suffered an injury that was diagnosed as a corneal abrasion to my right eye. I had all the expected (and painful!) symptoms, but the doctor's advice wasn't terribly helpful. In particular, I was finding that I would be awakened in the middle of the night with an episode.

I found this forum and discovered that the Muro 128 ointment before bed seemed to do the trick for me and the erosions pretty much stopped, except for mild "twinges" now and then, often during the day.

However, in the last week or so, for no reason I can figure out, the middle-of-the-night episodes have returned in full force. I can understand that one bad episode can trigger a series because it's undone much of the healing that had already taken place. But the Muro ointment no longer seems to have any effect, and I've even had multiple episodes in a night. Needless to say, I tend not to feel particularly rested by morning, and my ability to attend to my daily activities is suffering.

The doctors I've consulted her seem very reluctant to suggest anything more proactive than drops or ointment, I think because they don't find my situation "severe" enough to merit options like laser surgery. I'd welcome advice from other members of this forum -- I'm particularly aware of mike1961's advice about getting the artificial tears into the eye before opening it, but my problem has never been when I wake up, it's always at one or two in the morning -- I don't see how I can follow his advice in that situation.

Any suggestions??

David, one thing I used to do when I was in the middle of terrible erosion episodes, is I'd set my alarm AHEAD of the earliest time I'd had an erosion, in the night. Set it to ring quietly, so it doesn't startle you. Then at that time, I'd apply more Muro 128 ointment and go back to sleep. I continued this from November to March in 04-05, then again August 05 to January 06. I usually set it for 3am, about halfway through the night. I don't know what your sleep schedule is, but maybe you can try this - waking before your earliest usual erosion. (Be sure to use moisture drops with eyes closed, before you open to put Muro and as Mike says, warm the Muro before using - it spreads out in the eye so much better)

Can you get your doctor to let you have doxycycline? Its helped me as well (you probably read others' positive comments on this)

David - a few things (this is "long winded" but I hope it helps):

First, the reason it has come "in full force" is because your epithelium has "thinned out." In other words, think of it like this: imagine a bowl of sand and you then "scoop out" or "rub off" or "erode" the center by taking a handful of sand out of the center of the bowl. Now, what happens is the sides of gap you created in the bowl "fill in the gap" you created or "eroded" away from the center so as to create a new level surface. That's exactly what happens with the epithelium.

Here's the process: no one's eyes produce tears when sleeping and you may even sleep (as many of us do) with our eyes just slightly open which causes extreme dryness and also explains why over 90% of all erosions are in the 6 o'clock position of the cornea. Then when you awaken and move your eyelid it sloughs off the cells before you have a chance to produce tears. Now, you have that "gap" like in the analogy of the sand example. There can be moderate to severe pain. The gap is then "filled in" by the surrouding epithelial cells. When this happens, the pain may be gone. It's even possible that is gone within an hour or by the end of the day. But, you are less healed than the day before because as in the sand analogy there is now LESS sand in the bowl. Similarly, your epithelium is now "thinner" even though the "gap" is filled in. Therefore, it takes even less erosion now for you to feel pain that you otherwise would not feel if your epithelium were thicker.

Now for some advice on what has worked wonders for me along with some things to consider:

1. As Jane pointed out doxycycline can be a big boost for helping with any occular surface disorder. It's not the antibiotic but rather a side effect from the antibiotic that helps prevent erosions (many doctors are not at all aware of this side effect). The side effect is only present in the "cycline" antibiotic group and doxycycline is among the best. The recommended dosage is 100 mg daily for 6 weeks but check with your doctor. Even a dermatologist prescribes this stuff for acne.

2. There have been additional studies that show over a 90% recovery when combining doxy with prednisone (and not using any other techniques but that). Many doctors will not prescribe prednisone because it's a steroid and can increase eye pressure. The prednisone from what I have read is combined with doxy and the prednisone eye drops are only prescribe for 1-2 weeks.

3. PTK has a 90% recovery and 99% recovery when doing a second app if necessary and also may improve nearsightedness (since most RCE sufferers are at least in or approaching their 4th decade of life). I personally believe many doctors don't do it (just my opinion here) because they either are not trained well enough in the procedure or just don't want the risks or prefer more conservative means...just not sure but they have a "regimen" and stick with it.

4. ASP - personally I would avoid stroma puncture. It can cause scarring and may only be 50% effective or more but there are other methods. I'd do PTK over ASP any day of the week.

5. Dehydrex drops - still in the trial studies but if you are timid of surgery these drops have shown around 90% cure rate with no side effects.

6. Home Methods - well, if you are somewhat lazy and timid of surgery like me, then I'll tell you what I learned and do. First, I used to get erosions at least weekly with increasing frequency from 2-3 times a week and increasing pain to the point of enormous panic and anxiety. July 2004 - I will never forget it - my last major erosion I ever had and it took 10 days to heal. That's when I got the idea of adding drops before opening my eyes. So, here are the tricks:

a. First, almost all erosions happen when you are awake even if you are groggy. No major erosion is going to happen in your sleep unless you move your eyelids with great intensity. Put another way, it's movement of the eyelids that cause erosions and nothing else.

Learn to put artificial tears in immediately when you awaken before you move your eyelids; it's that simple, and it is simple. When you awaken, lay on your back and put them in at the corner of your eye and nose so that gravity allows them to flow down your eyes. You cannot overdose on artificial tears so be liberal with them especially when you are healing.

b. Open your eyes SLOWLY and add more tears if necessary.

b. Don't sleep on your back.

c. Do what you can to keep your eyes shut when you are asleep. Sleep on your stomach if you can or wear an eyemask or have the pillow press against your forehead so as to keep your eyes closed.

d. If you have an erosion - What you immediately do is important. Remember, erosions set you back because you are "thinning out" your epithelium (just like removing sand in the sand example) and it will then take time for it to thicken again. It can easily take 6 months or even a year or longer even though you are in no pain at all. The process can go either way (thicken or thinning of the epithelium).

Therefore - if you have an erosion, you want to make the erosion as "minor" as possible so that as few cells rub off the epithelium. Here's how:

First - do not blink. Blinking is the worst thing you can do after an erosion as it will rub off more cells until your eye produces tears and then continue to rub off even more cells like an avalanch. I know it's painful. Instead, lay flat on your back just as you would when adding tears without an erosion. Continue to try as best you can to relax and keep your eyes closed. Add artificial tears as soon as possible and continue to add them for pain. Lay flat on your back with your eyes closed for at least 15 minutes. Just try to relax until the pain subsides and continue to relax longer almost as if going back to sleep or meditating (but don't go back to sleep - remember never fall asleep on your back). Continue to add artificial tears for pain as often as you like with your eyes closed. The back is the worst position for sleeping but ironically it's the best after an erosion for limiting the severity. After what feels like 15 minutes add artificial tears and SLOWLY open your eyes. If they still feel awful, repeat the process. If things appear much better, wait another 15-30 minutes and warm your muro 128 tube under warm/hot water and gently pull down your lower eyelid and add the ointment in the crevice (as much as you like, you can't over due it but usually 1/4 to 1/2 inch is more than enough). Do not drive right away as your vision may be blurred.

You must program your brain to not move your eyelids at all when you awaken. You can do it believe me. It's classical conditioning. We don't go to the bathroom in our sleep so there is no reason we can't learn to stop immediately popping are eyes open when we awaken. I believe I have learned to awaken even when my eyes start to feel dry in my sleep. You can develop an enormous subconscious awareness of your body (mainly your eyes) by doing this. It's not as hard as you might think. When you go to sleep you have to tell yourself that you must keep your eyes still when you awaken or you risk being in extreme pain. Anyways, I'm erosion free with this now for almost 2 years with a few minor erosions (maybe 3-4 due to either carelessness or learning things along the way). But, as your epithelium "thickens" major erosions are far far less likely and the minor erosions become warnings to "get your guard back up."

Last - remember, adding drops is the key. It's not so much what you do 8 hours before an erosion (like adding muro) but rather what you do right before an erosion is about to happen (when you awaken). Add those artificial tears and your eyelid will not rub anything off. Do not "test anything" but just add artificial tears every single time you awaken even if you fall asleep and awaken again 15 minutes later. I have awakened many times where it feels as if my eyes are "cemented or stuck closed." No question that moving my eyelids could have caused a massive erosion. Now, I just add artificial tears and wow - the magic of feeling in control; I'm no longer powerless to this horrible syndrome but now I'm in control. It really works.

Best to you and keep us posted,
Mike

David, I forgot to mention that my advice can help tremendously for many reasons. Here's why: first, every single time you awaken, your eyes are "sloughing" off cells. By adding artificial tears before moving your eyelids or getting the artificial tears in as quick as possible (even when there are no erosions - just add them every time you awaken before you move and open your eyelids) you are creating a situation where fewer and fewer cells will be slouged off thus allowing your epithelium to thicken faster.

Second - If you are having erosions often, I hate to say it (and disagree with you) but I strongly believe you are awakening in the middle of the night but may be extremely overtired from the syndrome. Also, you (just like most) are so in the habit of immediately "popping" your eyes open when you immediately awaken as you have since childhood that it's just second nature. Everything happens so fast that you are not even aware that you were awake (even if for a split second). You can train yourself to get those drops in before you move your eyelids and make that second nature instead. I know you will probably disagree with me here but try to keep an open mind because I believe you are awake first then immediately pop your eyes open so fast and then bang - it's another erosion.

Mike



I'm particularly aware of mike1961's advice about getting the artificial tears into the eye before opening it, but my problem has never been when I wake up, it's always at one or two in the morning -- I don't see how I can follow his advice in that situation.

Any suggestions??

So if I understand correctly, you're suggesting that (1) I happen to wake up, (2) try by second nature to open my eyes, and (3) trigger the event, whereas I thought that (1) eye movement while dreaming triggers the event, which then (2) wakes me up.

Generally, it's been happening 3-4 hours after falling asleep, not eight. I suppose it's possible that your scenario is the correct one, and perhaps I'm often waking in the middle of the night without ever noticing it and notice it now only because of the pain (!)

I will have to experiment to see if I can use your method though if the doxycycline/prednisone option works I would be quite happy.

I would also like to find out more about the Dehydrex option (which I am sure is unavailable here in Canada). I see from elsewhere on this board that PTK has a reasonable chance for success as well, though my doctor seems unenthusiastic about it for some reason.

Interestingly, last night I went to bed at about 11 and woke up spontaneously at 1, 3 and 5 ... no erosions, but just an irresistable urge to put some of the artificial tears in. I must have absorbed JaneNY's suggestion into my subconscious!

Thank you both for your thoughts on the subject.

Second - If you are having erosions often, I hate to say it (and disagree with you) but I strongly believe you are awakening in the middle of the night but may be extremely overtired from the syndrome. Also, you (just like most) are so in the habit of immediately "popping" your eyes open when you immediately awaken as you have since childhood that it's just second nature. Everything happens so fast that you are not even aware that you were awake (even if for a split second). You can train yourself to get those drops in before you move your eyelids and make that second nature instead. I know you will probably disagree with me here but try to keep an open mind because I believe you are awake first then immediately pop your eyes open so fast and then bang - it's another erosion.

Another thought: I sense that most people have an episode when waking up in the morning, after 8 hours sleep. That's never been my case; it's always after 2-4 hours. Is this significant in any way?

Hello - here's my thoughts:

You said: (2) try by second nature to open my eyes
Actually - it's more than just "trying." It's something that I forced myself to do because I was terrified of the pain. Very quickly, it just became second nature. I (like you) found myself sleeping more lightly due to anxiety (which explains why you may be waking in the middle of the night.

You said: (1) eye movement while dreaming triggers the event, which then wakes me up.

That's extremely unlikely and almost impossible once you start healing. In theory it may be possible if your epithelium is very very thinned out in which case it can even happen during the day when blinking. But usually the likelihood of that dissipates pretty fast. You have to remember this: erosions are far more likely by "movement of the eyelid" not "movement of the eyes." REM is such a gentle movement of the eyes and the eyelid movement is probably almost nonexistant unless your eyes rub up against something which is again not a daily occurrence.

You said: I suppose it's possible that your scenario is the correct one

Try adding artificial tears every time you awaken. What do you have to lose? By the way, be sure to insert the TIP of the artificial tear bottle in the corner of your eye so that it gently touches the scalera of the ey so that the drops immediately go right in your eye rather than over your eye.

You said: I will have to experiment to see if I can use your method though if the doxycycline/prednisone option works I would be quite happy.

Use all your assets. Try both. But again, many doctors will write prescriptions for doxycycline like it's candy but good luck getting the prednisone. Either way, the doxycycline by itself should help. Best thing to continue to ward off erosions is to add the artificial tears right upon awakening. Even if you knock the artificial tear bottle off your nightstand or can't find the bottle, as long as you keep your eyelids still, you'll be fine until you find the bottle (or keep a second one handy in the drawer).

You said: I would also like to find out more about the Dehydrex option.

You can find it by doing a web search. Holles lab makes at and your doctor would have to get in touch with the Ph.D. there to enter the trial studies.

You said: I see from elsewhere on this board that PTK has a reasonable chance for success as well, though my doctor seems unenthusiastic about it for some reason.

I've read some posts on this forum about how some doctors either don't have enough training in it or don't like the cost of renting the machines or something else. Also, if you go that route, do a lot of research on both the doctor you choose, how often they do PTK and also what machine they use. I've heard the newer ones are more accurate.

You said: Interestingly, last night I went to bed at about 11 and woke up spontaneously at 1, 3 and 5 ... no erosions, but just an irresistable urge to put some of the artificial tears in. I must have absorbed JaneNY's suggestion into my subconscious!

When you awaken - remember to lay flat on your back, keep your eyelid and eyes still and insert the tip of the artificial tear bottle in your eyes.

One other thing - sometimes when the weather changes because we may be sleeping with our eyes slightly open, the weather can cause extra dryness and make erosions more likely unless you get the artificial tears in before you move your eyes.

Best to you and keep us posted.
Mike

Oh, a couple of other things:

I had no luck with Muro 128. I had tremendous difficultly using the ointment, and while the drops were easy to put in my eye, they did not help.

As others have said, do not use Muro 128 when you have an active RCE. It would be like putting salt on an open wound.

I hate ALL OINTMENTS. I cannot put an ointment into my eye. That is why I like the Refresh Liquigel.

I have been a big user of Omega 3 EFA, and while I am a big believer of Omega 3 EFA, I was taking mega dosages of Omega 3's, when I was having many major RCE's. I would even take more when I had an RCE, as it is a natural anti-inflamatory. So, for me, while I very strongly suggest Omega 3's for its heart healthy benefits, it did not help me with my RCE's. (Or, maybe my RCE's would have been even more frequent and severe without the Omega 3's) - That is a difficult one to figure out!

I often drink lots of water in the evening, maybe 60-80 ounces or so, I do so now, and when I was having many RCE's, so, for me at least, drinking plenty of water did not cure my RCE's.

Hi Everyone:

Wonderful posts. I can sympthathize with what everyone has been going through. I've had RCE for almost 3 years now. Although it's Summer, I'm getting episodes more regularly now and don't know why. Although my episodes are not debilitating, they sometimes wake me several times during the night. I'm back to using Muro drops 4 x a day and continue to use AKWA ointment at night. My Eye Doc gave me great new drops! Systane makes a Liquid Gel drop and they are very good! They are called Systane Free. Just thick enough but does not blur vision.

I convinced my Dr. to give me a prescription for Doxy. He won't prescribe Steroids and he doesn't want to put me through PTK. He said he would be doing me a great disservice. He gave me 100 mg. once a day with quite a few refills. Do the erosions stop once you are on the med and then come back once you stop? Do people just stay on it for as long as they can and try to heal (at least 6mths.) or does the medication inhibit the enzymes permanently after you take it for 2 months and then you're done?

Anyone?

Tx. Anninalbany :wave:

Budd - you really caught my attention when you said: "protect the very corners of my eye, even when I might burry my head deep into my pillow"

I'm no expert but I recall reading an article a while back about people who wake up with their heads buried deep in the pillow which also may cause erosions. But, in that situation, RCES may just be a symptom of yet another problem. I advise you to do a web search or check emedicine for "floppy eyelid syndrome." I'm not saying or suggesting you have it but you may want to check and if you suspect you might, talk it over with your doctor to explore ideas which may also help that as well as the RCES. Best to you.

Anninalbany - Sometimes the more frequent occurrences or "tendencies to occur" may be due to the weather and dryness. Best thing to do is tell yourself and position yourself in such a way as to keep your eyelids closed when asleep (for some - eyemasks may help). Also, keep your eyelids as still as possible in the morning until you can get the artificial tears in - blink as little as possible until then. Maybe it's just easier for me because I tend to almost always sleep on my stomach. If I doze off for 15 minutes or so in the morning on my back I always turn my head to one side but again I've learned to develop a very good "body awareness" when I'm sleeping. That could explain why I have had so much success in not sleeping on my back with my head facing the ceiling and also why I can get drops in when awakening in the morning before moving my eyelids. I don't even rush it anymore when I awaken; I just keep my eyelids still. I do believe anyone can learn it with practice.

I have to say I almost "chuckle" when you said you "convinced" your doctor to give you a prescription for the doxy. I'd either get another doctor or just see a dermatologist or my GP. I've heard of conservative but that is really to the extreme. The only risks I know of with the doxy are potential yeast infections. You say he would be doing you a disservice by doing PTK? What is the disservice and why? I'm certainly curious as to how it is a disservice. For as you know, some have posted hear how it also smoothes the surface and can improve vision.

Regarding your questions about the doxy - the answer is yes - it actually kills the enzymes permanently after you take it for 2 months (it's the enzymes that "sit around" and do nothing - sort of defective and increase potential for erosions). After that - I would still suggest that you continue to add artificial tears before blinking or moving your eyelids when you awaken to continue the healing process. I haven't taken the doxy in about 6 months but like 6 months ago I may start another 3-4 days of it for acne. Nowadays that's really all I take it for and it seems that my genetics respond best within that time frame. But, about 18 months back I did take it for about 6 weeks. Many need to take it on a full stomach or it can cause irritation. For me, it never did even on an empty stomach.

As far as staying on it for the long term - I would check with your doctor. It is as you know an antibiotic and you know how there is some concern these days about taking antibiotics when not really necessary. For me - the best medicine is still adding drops before moving my eyelids. When I gather up the courage I may do PTK but that would not be so much for RCES as much as for nearsightedness and RCES (even though I have not had an erosion in years - I still know I have the syndrome).

Best to you,
Mike

Mike:

Many thanks for the info. My Corneal Specialist is actually in one of the better known groups in Upstate NY. His partner is internationally reknowned and had input into the design of the VISX ? laser. I have always had excellent vision and even now at 49, I only just started to wear reading glasses. I still have 20/20 vision. He has nothing to correct. He said the laser would make my vision worse, especially my night vision. Some people get bad glares from it. My Doc was fine with the Doxy and is familiar with the Dursun study and Metalloproteinase enzyme activity Maybe I should not have used the word interesting "convinced." It's also interesting to note that in the study, none of the patients had Corneal Dystrophy, but I do.

I will try the Doxy next week. I figure I have nothing to lose at this point! Wish me luck everyone!!!!

Anninalbany

He said the laser would make my vision worse, especially my night vision. Some people get bad glares from it.

Anninalbany

Hi Anninalbany -

I'm not pushing PTK, but I'd like to make sure you are getting the right info. Even if your doc is internationally reknowned, etc, there is the possibility of a misunderstanding of terminology.

PTK does not cause glaring. Lasik does. There is a simple explanation for this: Lasik doesn't treat the entire cornea, so the cornea ends up with two different curvatures - the corrected one, and the uncorrected one. PTK works on the entire cornea (as does PRK, for refractive treatments). Also, although PTK doesn't actually change the corneal shape, it generally smooths the corneal surface so that vision gets clearer, if anything.

Yes, Lasik is a terrible idea for anyone with RCE, or who has had it, especially if you have a dystrophy. Lasik would be a disservice, PTK would not. Are you sure he was talking about PTK and not Lasik? If he was talking about PTK, that's a new one on me - there's simply way too much evidence out there for it being a service, not a disservice.

I doubly say this, because I know you've had this a long time, and I'd hate for you to discount PTK because of a misunderstanding.

ebmd

EBMB is right. PTK works on the entire cornea (with no refraction aka Lasik aka PRK) and basically as I understand it, it "burns off" the entire epithelial layer so that a completely new one can grow back (is that debriding...I know I'm not spelling that term right). Anyway, the theory being that in RCES the epithelial cells don't stick down and adhere strong enough so with PTK a completely new one grows back and there is a polishing process as well. The new one is supposedly more smooth and even which explains the extremely high success rate 90% the first time out and 99% when done a second time.

EBMB - to further elaborate on what you said about Lasik being a terrible idea for RCES sufferers I would like to add that it can trigger RCES in those who have never had RCES and can also add to dry eye syndrome (since nerves are cut).

As always - research it further we need to educate our doctors so they may provide us with better treatment.

Mike

David

I have had RCE's for many years - the same as yours usually after about 3 to 4 hours sleep. When I am going through a bad period, I have often had 3 or 4 episodes in one night. My problem was actually caused by laser surgery twelve years ago to correct my vision. I had two PTK sessions after that to try to correct the ECEs but the problem got worse. I have tried every combination of gels, drops and ointments and for the moment am mostly symptom free. This has happened before but I seem to become immune to the stuff after a few months and need to change to something else. Presently I use Muro 128 drops in the morning, then Muro 128 ointment and GenTeal gel at bedtime (one a few minutes after the other). I seem to have trained myself to wake up after about 3 or 4 hours sleep, then put in lots of GenTeal gel, which usually gets me through till morning. I do not usually have dry eyes during the day or a problem upon wakening in the morning.

Hope this helps.

I am a 28 year old female with moderate to severe RCE in my right eye. I got this 2 months after I scratched my cornea with my fingernail last December. It got so bad at one point that I was really depressed about it. My eye was sore all the time. Not so bad now. I went 3 weeks recently without any sort of episode which is my longest yet. And the epsiode I had when only rate 4/10 so it was fairlyt mild compared to some ive had in the past. Im lucky enough to still have 20/20 vision.

I've been through 2 GPs and 2 opthamoligists and have now been refered to a cornela specialist. Currently I am using Refresh Plus eye drops during the day, and Lacrilube at night. I also have been using Fucilthamic antibiotic eye ointment for just under 2 months now. Does anyone know if its normal to find the eye is less irritated when using eye antibiotics? Optho seems to think its alright to use it daily if its opfering relief but im concerned about this.

My sclera (white bits around the eyes) has been badly bloodshot since my first RCE Episode. And the eye antibiotics are the only thing that seems to help that redness and irritation.
So a couple of questions

* Will oversue of fucilthamic trouble my eyes long term?
* I have been having eyelid spasms frequently for the last two weeks, is this related to RCE as it is in that eye?
* And if corneal specialist suggests surgery to try and fix problem PTK or puncture?
* Also opthos seem to think red irriated sclerea has nothing to do with RCE? but has only been like it since RCE started any suggestions?

Thanks for any advice

Does anyone know how long it takes for one to start noticing the benefits of the Doxycyline? I just started taking it a week ago and have had a few very minor erosions. I intend to stay on it the full 8 weeks and I'm taking acidophilus tablets. I'm trying to stay positive and hope it works for me. I don't know if this treatment option is as effective for people with a Corneal Dystrophy who have faulty adhesion complexes to begin with. My RCE was triggered by a fingernail trauma.

Best of health to everyone.

Anninalbany

Hi Anninalbany

Im so glad theres still someone else here who wants to talk about rce (not htat im glad you suffer from it, I wouldnt wish it on anyone). Mine is from fingernail trauma as well. I dont know about your doxycycline but if you get results please let me know. (what is it?)

I had an aggressive epsiode last night for the fisrt time in 16 days and the time before that was 21 days between episodes. Last night would've been a 6/10 on the pain scale. All im using is antibiotic oimntment morning and night and lacrilube before bed. I use refresh plus tears as well because i find the packaging conveniant. I dont think theres much research here in little old NewZealand so all the opthos ive seen have been pretty much talking about that puncture thing. Which by the sounds of it isnt the option I would want. im seeing a corneal specialist next wednesday and im going to ask him about this antibiotic/steriod combo that people talk about, before we get all aggressive with surgical options.

Do you find your whole eye is often irritated? I mean between episodes. Mine is irritated most of the time, often it feels like I can feel every change in temperature through my magic eye...gotta have a sense of humour about it.

I think it can take 4-6 weeks to notice the benefits. As mentioned in my prior posts some combine it with prednisone as well for greater benefits but of course prenisone is a steroid and is taken for 1-2 weeks with doxy if the doc will prescribe it at all. Otherwise, there is of course the Dehydrex trial studies.

I'm still just adding drops before opening my eyes in the morning which does wonders (no erosions are possible if you get them in before moving your eyelids).

Mike

hey annainalbany, any luck with the doxycycline yet? Are you using a topical steroid as well? Ive just had the NZ NHI cancel my appointment with the corneal specialist tommorrow. But Im really keen on trying this before the surgical options the opthos have been pushing.

Mosh:

Here's an update: I've been on the Doxycycline 100 mg. once per day for less than 3 weeks now (18 days). I can't say that I've noticed any difference yet. I'm still getting very minor erosions from time to time. My left eye is worse since I had about 3 minor traumas to that eye (fingernail poke, eye makeup remover pad slipped, etc.) over the past 3 years.

I am not doing the steroid drops yet. Glaucoma runs in my family. Each individual is different in the way he/she responds to certain treatments. Doxy is pretty inexpensive and easy to get, so I figured, what do I have to lose, right?

My only concern is that I have a few factors against me, such as a Corneal Dystrophy, Dry Eye and hormonal changes, which I'm sure do not help the healing process. I'm am anxiously awaiting FDA approval of Dehydrex drops, which I've heard are very effective. I have talked to researchers at the Lab where the drops are being developed and results so far look very positive.

I'll keep everyone posted.....

Anninalbany

Greetings to you all:
Hope that you all are erosion free -- keeping free of painful incidents. I have been using Refresh Tears since February and am fairly free of erosions - had a few minor ones. By applying artificial tears liberally at night and whenever I awaken, I am managing to keep the erosions at bay fairly well. Mike's advise to NEVER open your eyers without first applying artificial tears is the most important step to take. The other preventive tactics include keeping the eyes shielded from wind and dust and drafts. I always wear protective glasses - either sunglasses or my prescription lenses.

As I may have mentioned, I have a Jones tube (artificial tear duct). Recently, it has been getting stopped up -- won't drain. By repeated flusing with artificial tears, I am usually able to get it flowing again. One might suggest that I leave it stopped up - since there are many more tears in my eye - keeping it lubricated. However, it is also annoying to have too much tearing.

I send you all best wishes -- keep erosion free!
Janet

One might suggest that I leave it stopped up - since there are many more tears in my eye - keeping it lubricated. However, it is also annoying to have too much tearing. Janet

Logically at first that might make sense. But, because the eyes do not produce tears at all when sleeping and if you like many sleep with your eyes slightly open then rather than your eyes being more moist all the time, your eyes will be overly dry at night anyway and overly moist during the day.

What exactly is this Jones tube supposed to do? Have you thought about having it removed since you seem to have learned to add tears before opening your eyes in the morning? Lately, when I have awakened in the morning I've fallen back asleep several times (I was never a morning person) and I add artificial tears before opening my eyes each time.

Best to all,
Mike

Mike,
Your question about the Jones tube. It replaces the tear duct in the corner of my eye by my nose...this duct drains the tears from around the eye into the back of the nose which then flow into the back of one's throat. When my tear duct scarred over -- no tears could flow, so the opthamologist inserted a very tiny, hollow glass tube into the channel .. its basically the plumbing system for my tears. It works very well when not clogged up...but occasionally the tube must get gunk stuck in it....which must be flushed out. If you search on the web, you can find pictures of glass Jones tubes (magnified). I do not consider having the tube removed. It would be possible to plug it temporarily..

I agree with you about continually inserting artificial tears. I reapply these each time I awake at night --- sometimes several times - quick and easy. It seems to keep the cornea hydrated and eyelid lubricated and free to move.

Best to you all,
Janet

I agree with you about continually inserting artificial tears. I reapply these each time I awake at night --- sometimes several times - quick and easy. It seems to keep the cornea hydrated and eyelid lubricated and free to move.Janet

Right - I've been successfully doing this now for over two years. I believe it's certainly a great way to avoid erosions and if only more people would just try to make a conscious effort to keep their eyes closed, still and relaxed when awakening, they too would most likely avoid erosions. Many seem to think they wake up in the middle of the night to an erosion where in reality they first move their eyelids upon awakening (or rub them against something). In other words, I don't believe erosions happen while one is in deep sleep but rather upon awakening.

I suppose other options could be doxy, doxy/prednisone, dehydrex or ptk.

Best to all.
Mike

Well, Ive been keeping my erosions in check successfully for the last 1-2 months, be always lubricating my eye before bed and keeping artificial tears on hand for when I wake up. Ive only had a few mild erosions in this time and 2 Major ones). BUT for the last 4-5 nights I have been having mild erosions 3-4 times a night and it is becoming particularly painful now. My eye is very red and is incredibaly swollen and irritated all day. Its like my old methods have just stopped working and its going back to what it was like when I started having erosions. Ive managed to get an appointment at the eye clinic next Wednesday and im gonna talk about doxy and steroids.

Hello, I've been reading you posts regarding corneal erosion. I had the same thing, very severe infact. I ended up seeing a specialist eye doc in Nampa, Idaho by the name of Jorge Martinez. He said that he has successfully treated this issue before. What he did was he prescribed eye drops for me called Lotemax. These are used for patients recovering from eye surgeries. I was dosed at 3 drops a day for 2 months and then 1 drop a day for 6 weeks. I had doc visits every month and each visit he told me that the erosion was healing more and more. It is a lengthy process. Additionnally he told me to get some Bausch and Lomb Muro 128 5% eye ointment and to put in about 1/8 inch or less every night before bed. My last visit too him was in January and thngs have been very good since then. I did have one minor inccident about 6 weeks ago but I think that was because I put the ointment in too early before going to bed. The eye ointment is fairly expensive at $20 a tube but it apparently has the right stuff in it for healing and eye health that the others don't.
Feel free to email me if you would like more details.
Mike



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I have an appointment with a "corneal specialist" tommorrow. I will be surprised if I get any help to be honest. Ive had a 2 good months and then and awful last 3 weeks with my RCE and its starting to get to me. I drink lots of water, I use eyedrops before opening my eyes. And I can actually handle the night time erosions. Its the fact that when im having erosions every night my eye is sore every day. All day. I wear a patch sometimes just to rest it as it gets quite sensative to light. Im going to talk to the corneal specialist about Doxy and steroids and Im also willing to discuss PTk with him but if he mentions that puncure thing (as the last two opthos have) Ill be looking for another optho (again). Has anyone had any luck with BCL? im thinking of talking about this with him. Im only 28 so this seems rare that Im having so much trouble with RCE at this age.

Moshpit - yes it is rare at 28. If I were you I would definitely try the doxy since you may have an infection in the eye which is causing your erosions. Consider asking the doc about a 100 mg/day treatment for 6 weeks. The other thing to try is a drop called sulfacitmide (something like that - it's an antibiotic drop).

Consider when you awaken after about 15 min - warming and applying muro 128. Are you diligent about trying to wake up with your eyes completely still and relaxed? I can't see why you would be getting erosions if so.

Mike

Hi Mike

I dont think Muro 128 is available in NZ. I use fucilthimide antibiotic ointment twice daily in my affected eye (have been doing so for 2.5 months). I also use lacrilube at night and use refresh plus tabs before I wake up every time I wake up. Ive printed some stuff off this site to take to the optho today. the appointment is only 1 hr away so im getting excited about talking to someone who "might" know what they are talking about. I cut my cornea with my fingernail in January and started having awful erosions late febuary that got more frequent through March and April, I got some relief through May and June But this last month it has been awful again (up to 3 erosions nightly). Ive had some good things come out of it though. I no longer smoke, and i drink a hell of a lot more water than I used to. Funnily enough, i also appreciate what I have a bit more than I use to (family wise). I read this site and I wonder why not many other RCE sufferers seem to have the ongoing pain I have during the day. My eye is really sensitive to light and temparature most days.

OK..good news. I just got back from my appointment with the corneal specialist. He has recommended a BCL (once a month contact) over 9 months in conjunction with a "cycline" treatment. Although not doxy, its a different one, more expensive but less likely to cause thrush. I really feel like thi is the first optho who knew what he was talking about. He has told me to stop using Lacrilube at night, actually stope using lubrication in general. Just use artificial tears when i wake up in the morning. ll kepp everyone up to date o how the treatment goes. im booked at an optometrist Monday morning for the fitting of a lens. And im starting the antibiotics tommorrow.

Im only 28 so this seems rare that Im having so much trouble with RCE at this age.

I think it's a little early, but mine hit hard at 26. I also had pretty severe light sensitivity most days, especially after an erosion. It was a strange feeling, because it got to the point that I'd be unable to open my eyes when I was outside - as if my eyelid muscles had shut down. I finally got PTK at 29 to fix the RCE.

Good luck with the BCL,
ebmd

Hi ebmd,

So PTK worked for you? The Corneal specialist I spoke with said if this doesnt work (the BCL and the minocycline @100mgs twice daily) we will look at PTK, Im trying to leave surgical options as a last resort for both monetary reasons (I dont think NZ ACC will cover it) and complication risk reasons.

And to all, excuse my spelling in my post yesterday. I was a bit over excited about my conversation with the corneal specialist.

Oh and In some earlier posts some members seemed to think that the cycline antibiotics caused erosions when first taken. I asked the Dr yesterday and he seemed to think it shouldnt. I think said he was involved with some trials in the UK.

Hi ebmd,

So PTK worked for you? The Corneal specialist I spoke with said if this doesnt work (the BCL and the minocycline @100mgs twice daily) we will look at PTK, Im trying to leave surgical options as a last resort for both monetary reasons (I dont think NZ ACC will cover it) and complication risk reasons.



Hi moshpit-

Yes, it worked. I had it about 5 years ago now. Up till then I was having daily and nightly erosions, but I have not had one since. If you get it done, get someone who's done them before. Severe complications are rare. If you do go that route, ask some more questions if you want.

Check on the medical coverage. In the states, PTK is generally covered, since it is considered medical. PRK, a closely related cousin, is generally NOT covered, since it is cosmetic.

Good luck with your treatments,
ebmd

Moshpit - the cyclines are excellent for RCES. Personally, doxy is the best but all the cyclines have the side effect of helping the cells adhere better. The reason your eyes are so sensitive during the day is because your RCES is severe. You really may want to consider adding drops before opening your eyes in the morning but in addition. RELAX and keep your eyes closed for 15 min every morning and add artificial tears as necessary. Consider changing your brand of artificial tears since there may be a preservative or something that your eyes are alergic or sensitive to. Personally, I like refresh tears but I have used Tears II in the past (which has Dextran 70 in it). Otherwise, have your doc look into Dehydrex trial drops or there is always PTK. Finally, be careful with the contact lens therapy since they can cause a greater chance of infection (but you are on the cyclines which is good). Also, I would not do it long term because it can starve the eye of oxygen forcing it to create new artery pathways which could affect vision. I personally would avoid lens therapy (they are good for helping with pain after a severe erosion but again they can lead to infection and also starve the eye of oxygen).

Best to you,
Mike

Well..Update. This is Day 5 of Minocycline and Day 2 of BCL.. my eye was a bit red and raw this morning after first nights sleep in the BCL but not so bad other than that, no erosion overnight. Checked in with optometrist this morning and I go back tommorrow afternoon for another look in to make sure that its settling alright. Its a bit bizare beczause he had to give me the weakest prescription lens as he didnt have any blanks as such. Will keep everyone up to date. Im being very vigilant for eye infections so I may not be able to keep the BCL thing going but id love to give it a good go.

My personal experience has been that wearing protective eyewear (goggles, sleep masks etc) to sleep, seem to help reduce the # of RCE's that I have. In the last few months, the few RCE's that I did have, occured when I, by accident, fell asleep without any protective eyewear.

I have a whole box of assorted glasses, eyewear, sleep masks, goggles, and headbands that I have tried over the last year to protect my eyes, and have had less than great results, until the last couple of months, when I found a couple of nice options.

Up to two weeks ago, the best solution that I found, was to wear a combo of a pair of goggles, and a soft "sleep mask", and both did not restrict my eye (no pressure on eyeball or eyelid, as per my Eye Dr.'s instructions).

I had been wearing some racketball goggles called ZLeader Champion sports goggles. I liked these goggles, because they wrapped around my eyes, curving at the temple, almost reaching my ears. For hard goggles, they were extremely comfortable, and protected the corners of my eyes, so that even when I slept on my side, my eyes were completely protected, even when my head was burried deep into my pillow. Just FYI, the Bangerz HS-2000 sports goggles were almost identicle to the Zleader, and actually, for some people might be better, because they had side cushons, however, they were just a tad smaller for my "wide face", making them feel too tight to wear all night. But for some people, the Bangerz might be even more comfortable.

However, they did not protect against air flow, and I have to run the AC a lot here in Hot, Humid Houston.

So, I added a soft sleep mask, called antilightmask, that allowed for free eye movement (it had a concave bubble around the eye), but did not offer any hard protection, just air movement and light protection. What was nice, was that this mask has a very minimal skin contact, as opposed to most other sleep masks, that kind of feel like you are wearing a wash cloth on your eyes.

So, I wore both, and while it was awakard, it did work, but the down side, was that it did not breath, and would collect perspiration during the night.

Two weeks ago, I found an almost perfect set of protective goggles to wear when sleeping. At least for me, a side sleeper, that needs both impact and air movment (AC) protection, yet still needs my eye area to breath.

They are called Pyramex V2 Goggles with a Gray Lens (I think they come in clear and some other colors too).

While I had some initial quality problems that I was able to fix with superglue, these seem to be about the best eye protection for sleeping because:

-Comfortable to wear all night, when sleeping on your side
-protect the corners of my eyes
-protect from air and A/C movement and dust
-allow my eyes to see (EDIT-I mean BREATH!)
-grey shade is a nice plus, blocks out most ambient light, yet I can still see

OK, now I did have to superglue the lens to the frame, as the lens popped out, and I could not for the life of me, figure out how to securely pop the lens back in, and the gasket around the frame came unglued, and again, I had to superglue the gasket back (then put it under a fan for several hours, so that I did not get superglue fumes in my eye!)

I have worn these for two weeks, and am very happy with the results so far.

There are two other goggles that I want to try, but have not yet found a source to purchase them. I think I might like these better, as they look like they might be a little wider, to fit my face better.

They are (again, these are as of yet untested)

-AOSafty Large GoggleGear (with straps) Goggles
-AOSafty Large Fectogoggles (with straps) Goggles

I know that wearing goggles may sound wierd to some, but for me, this is a large part of daily, overcoming my RCE's.

Wearing goggles to bed might be awkward, but is MUCH MORE comfortable then even the most minor of RCE's!!

OH, one last thing, I have found, that, for me, when I DO get an RCE, I use the sports goggles, in conjunction with a relatively tight fitting headband over my closed eyes, to help heal the RCE. The headband acts as kind of a pressure bandage over my injured eyes, and, for me, seems to help me heal quicker, and seems to relieve the pain quicker. (The goggles protect my eyes from any impact, no matter how slight, that might occur and undo any healing that has occured). In 3-6 hours or so, my eyes have healed enough to wake up (my vision might be blurry, but at least there is no pain!)

(Oh, like most others, I also use both Refresh liquigel and Sustain drops in my eye at night, along with the goggles).

I hope this helps someone, as I have benefited from everyone elses posts here!

All:

I have tried masks, taping my eyelid shut and goggles. I cannot train myself to sleep with too much constriction on my eyelid - gentle pressure is fine -- but then it does not really keep the eyelid from opening slightly. The best approach I have found is to sleep on my left side and somewhat bury my eye (gently) in the pillow. This seems to keep my eyelid shut very well. However, I am sure that I move around at night and end up on my back or on the other side. Sleeping on my back is definitely the worst position.

I have been on business travel these last two weeks - will be out again next week. I spent this week in Pensacola, FL - very, very humid. Even the hotel air conditioner could not dry out the room -- it was definitely very humid. Of course, the high humidity was great for my eyes - keeping the moisture level very high. Inthe high humidity, keeping the eyelid fully shut is not as important.

I send you all best wishes -- keep erosion free!

Janet

I

I was doing really well with the BCL. I was 10 days into it and then this morning I went to the optometrist to have it looked at and he changed the BCL and we were gonna try two weeks with it in, which I WAS comfortable with. BUT now my eye is now bloodshot and VERY irritated and sore. I thought perhaps it was just a bit irritated from the old fingers in the eye at the optometrist but after 2 hrs its getting more blood shot and its burning a bit. Im worried that this contact is not the same fit as the other one I had in. I only had 1 ver mild erosion on NIGHT two of the previous contact and NO pain otherwise, but i think this new contact has caused some sort of episode, this is very painful. Im going back in about 30 minutes to see if he needs to take it out and refit another contact.

I thought this really might be the answer but with todays experience Im not so sure.

Just an update for everyone regarding the Doxycycline therapy. I have been on it for 7 weeks now, 1 more week to go. I am still getting erosions so Doxycycline has not been the cure all I've been looking for. I had erosions 2 nights in a row the other night and one around 6 a.m. yesterday. My left eye was burning, sore and red when I woke up. But it subsided very quickly. I had no foreign body sensation at all for the rest of the day. I plan on finishing the Doxy and have been taking acidophilus.

I am also planning to see a new Corneal Specialist for my next follow-up in December. The other group I was seeing was too big and too busy and I felt I was being rushed. I hope I have better luck with the new Doc.

EBMD - It seems to me that people who have RCE with an underlying Dystrophy have a much tougher time healing. I'm still anxious for the Dehydrex drops to become approved by the FDA.

Anninalbany

I think the "cure all" lies in one of these options (not necessarily in this order):

1. Doxy/prednisone combo
2. PTK
3. Dehydrex???

Otherwise - I still strongly recommend trying to learn as best as possible to keep your eyes as still as possible when awakening and add artificial tears into the corner of your eyes.

Mike

Just an update for everyone regarding the Doxycycline therapy. I have been on it for 7 weeks now, 1 more week to go. I am still getting erosions so Doxycycline has not been the cure all I've been looking for. Anninalbany

Well....heres my update. The irratation In my eye I was experiencing after the BCL got changed last week is not so much an issue now cos two days after the new contact went in I had an allergic reaction to something (maybe the minocyline), broke out in hives on my scalp, palms of my hands and soles of my feet and had the worst indigestion Ive ever had (two nights of the feeling that someone was trying to rip my spine out through my chest!) Couldve been the THERA TEARS ive brought it was the day after I tried on of them. But it was wierd I usually take 3 omega 3 caps per day of a different brand anyway. Anyhooo....BCL is still in. Optometrist is going to look at it today (which I dread beacuse she'l take it out and put it in and no doubt cause an erosion or something). Im on antihistimines as well, so no doubt the eye is very dry as well. But Im getting it checked for an infection. Anyone else here had a bad reaction to the minocycline or THERA TEARS?

Mosh:

Doubt it it was the Theratears. They are preservative-free on contact. Sounds like a reaction to the antibiotic. Minocycline is supposed to be easier on the stomach than Doxy. Are you taking it with food?

Antihistimines do tend to dry the mucous membranes and eyes out. I take Tylenol PM on some occasions to help me sleep. I could never do the bandage lens for a long period of time. My eyes are just too dry. I remember having a lens in for a week after a major erosion and I was putting artificial tears in every hour on the hour during the night. I was SO sleep deprived.

Good luck to you. Hope the BCL works for you.

Anninalbany

Oh I meant Thera Tears Nutrition. Just my bad spelling. And yeah well, last night i had an erosion under the contact. I wanna swear my head off about it. Just wanted to cry out of dissapointment this morning whe the optometrist told me it was another erosion. (no apparent reason- just dry eye i guess from the antihistimines). The opto tells me that the previous optometrist that owned the business had RCE and it really affected her. how hopeless is that? If the eye specialist cant fix her eye...who can? Hopefully I can stop taking these antihistimaines soon. Its a been a week, the Hives should be gone if the instigator of them has gone so heres hoping. I just dont want to get into that hopeless spiral of sore eye, sad me again.

Another thought: I sense that most people have an episode when waking up in the morning, after 8 hours sleep. That's never been my case; it's always after 2-4 hours. Is this significant in any way?
hi,
i just saw this thread and finally after YEARS of wondering what is wrong with my eyes, I now know that I have this RCE! It's usually my right eye and it's 2-4 hours after being asleep. I was told it was dry eye, but knew it was more than that..
Thanks for all the information, I feel better knowing what is wrong but still need to know more how to help heal myself.
Best to all eye sufferers out there...
:wave:

Oh you poor thing. RCE is tough, but many of us are able to control it. Mike's the expert around here - he came up with the idea of when you wake and your eye feels 'stuck', you want to use some lubricant drops to 'unstick' it. (I use Refresh liquigel for moderate to severe dryness) You must learn not to move your eyes upon waking if the eyelid feels stuck- you stated in the other thread that you felt it stuck and knew it would hurt to open it. You CAN teach yourself to do this DON'T OPEN the eye. Keep the eyeball very still, and with it closed, reach out, get your eye drops - (put them somewhere where you can get them blind - I keep mine inside my kleenex box) - put the tip of the bottle right in the corner of your eye and put in some drops with your eyes closed. The drops will seep in, and the eyelid will come unstuck. If your eyelid is stuck really bad you might have to do it a couple times. So be patient. You may want to lie right back, off your pillow so your head is flat. The important thing upon waking is don't panic, lie still and get the drops.

When its really bad, I used to set my alarm in the middle of the night to wake and put in more Muro 128 ointment. This has salt in it which is supposed to help the surface cells of the cornea (epithelial layer) better adhere to the layers under it. Many of us find its easier to use this ointment if its warmed. I just put the tube in my camisole a little before bed; some people keep it under their arm, but when its melted, it spreads on the eye better.

This is all based on the assumption that you've been to a doctor and received a diagnosis off RCE. In any case, the above remedies can't hurt, and have helped quite a few of us.

Hey backslide, Isn't it a relief to finally know whats wrong with your eye? I went into a downward spitral of depression before I finally figured it out and like you ive found this board reassuring. Its nice to know there are people that know the OW MY EYE feeling. Actually Ive just convinved my partner that he should name our new motorboat OWMYI...lol.

And JaneNY, speaking of that salt based ointment you guys use (muro) I wonder if living next to the ocean helps my eye at all? You know sea air and all.

Well. its been 8 days so far without an erosion for me (fingers crossed). Bandage contact seems to be doing its job. Im moving houses today though and its an hormonal time of the month for me so im just keeping those fingers and toes crossed that stress + hormones dont = erosion. Im booked to change my BCL every 2 weeks and id really love it if i could make it 14 days without an erosion. I even managed to go to a work seminar in Auckland (Smoggier City with Aircon everywhere) for two days this week and I managed my RCE with lots of eye drops and by having a good steamy shower in the evenings and mornings.

Goodluck with controlling your RCE backslide. It CAN BE DONE!!

Moshpit,
thanks for the encouragement. I am going to an ophth this next week to ask about it and maybe get some treatment or a referral to a cornea specialist.

I don't think living near the ocean helps --I live a mile away so that salt air isn't reaching my eyeballs. I am hoping maybe the Muro drops might help.
I need to look into that to try.
I'm also bad about not wearing sunglasses cuz I wear glasses, oh well, thanks for the info and good luck on staying erosion free:cool:

IMHO, best ways to avoid erosions continue to be:

1. PTK
2. Doxy + Prednisone combo
3. Dehydrex (maybe - trial stages)

4. Learning to awaken eyes closed still and relaxed. Lay flat on your back and add drops at the corner of your nose and eye (such that gravity works the drops down and across your eyes. Be sure to gently insert the tip IN the corner of your eye so that the drops go in your eye and not down the outside of your eye - I've been erosion free for about two years now using this method.

Mike

Another Update for Everyone Re: Doxy Treatment

I finally finished the Doxy and took it for 8 weeks. I'm disappointed to say it didn't work for me. I'm still getting erosions almost every week now. As everyone knows, there is no rhyme or reason to them. Summertime is usually a good time for me. It's such a tricky condition to treat and every individual is different. So it's back to the drawing board. I should emphasize that my erosions are not debilitating as they once were. They tend to resolve pretty quickly.

I do have an appt. to see a new Corneal Specialist in October. I hope she has some new insights into this problem. The only thing I can say is to try to educate yourself about this condition, so you are able to manage it better. I can't say enough about this Board. Thank you all!

Anninalbany

Heres something i found interesting. I moved this last weekend (as i mentioned in a previous post) And I thought the stress of it might cause an erosion. Funny thing is..my eyes had never felt better..until today when I came back in to town and WORK.

Now im putting it down to one of three things..
*Pine pollen in the town I work in (extreme - covers everything), *
*The dust/mould and all-out yuckiness of my old house,
*or the computer screen and flourescent lights I work infront of and under.

Im squinting again and my eyes have gone very red, my right eye is smarting.

Mike1961:

Does your Doctor consider your RCE healed at this point?

Anninalbany

Mike1961:
Does your Doctor consider your RCE healed at this point?
Anninalbany

Yes - he does but that is more of a "medical industry" thing. They say if you go a year without an erosion then you are healed. I see him for follow ups every 6 months. But, I know that it is still there. I don't think it is nearly as bad as it once was; not even close but that is because my epithelial layer is a lot thicker now due to avoidance of erosions. Also, my doctor will admit that if I am not "proactive" in this then "the process can reverse" and the epithelial layer will thin and I can get erosions again.

Honestly, I am so very in tune with my eyes that I can tell how they feel in the morning before I open them or move them. I know that I have to be and as long as I keep my eyelid muscles still and relaxed, I have all the time in the world to add the artificial tears and there's no need to ever panic.

Have you considered adding artificial tears before awakening? Otherwise, have you tried other courses of treatment such as PTK, Dehydrex or the Doxy/Pred combo? PTK is supposed to be incredibly successful but you just need to find a doc who is experienced at it. If you have fear of the surgery then again I hear the doxy/pred combo is about 90% effective (PTK is 99%).

Best to all,
Mike

So it's back to the drawing board. I should emphasize that my erosions are not debilitating as they once were. They tend to resolve pretty quickly.Anninalbany

That could be the effects of the doxy. But, you may want to consider a second course or a doxy/pred treatment. What dosage were you taking? Another thing you could consider is doxy along with artificial tear application before opening your eyes in the morning since so many docs are hesitant to prescribe the doxy/pred combo.

By the way - one other thing - I'm assuming your doc does not do the glaucoma eye pressure check at this time correct? That would be somewhat incompetant but you would be amazed at the number of docs that do it anyways on those with RCES. Then, what happens, the patient often gets RCES in both eyes.

Best to all,
Mike

Hi all,

I thought I'd weigh in on what my experiences have been lately with RCE. I have been taking Doxycycline for around 2 months now. I also use the genteal gel before I go to bed and upon awakening. I suffer with RCE in both eyes. I have been averaging about 4-5 days between erosions but can't seem to do better. This has been very frustrating. I have tried to use artificial tears upon awakening to avoid erosions but most the erosions ocurr before I even know that I have opened my eyes ( must be opening my eyes while sleeping ). I have read from others that it's possible to train yourself but I have not had success with it. I have noticed that I have most of the erosions when I sleep longer than 3.5 - 4 hours at a time. I am seriously considering setting an alarm to go off every 3 hours to avoid erosions by applying gel to my eyes. My wife will probably kick me out of the bedroom for this but I'm desperate to try anything. I have had the stromal puncture procedure in the left eye to no avail. In fact, I feel like it has adversely affected vision in that eye ( slight double vision and severe blurring after erosions ). I am very hesitant for the laser surgery but may get desperate enough some day. Any advice that anyone has would be greatly appreciated. I really appreciate this forum as it helps to see I'm not the only sufferer out there and others that know what I'm going through.

Sincerely,

gkinfw

I did the Pred-2 weeks, Doxy for 8 weeks (act I did around 11 weeks), and I noticed my eyes were much better. So, I started to cut back on the Doxy, and I started to have RCE's again.

NOW, they, (thank God!) were very minor, and some of them did not hurt at all, matter of fact, my current RCE in my right eye, I do not know when it happened. I do know that my eyesight in my right eye just all of a sudden became very blurried.

While this is a bummer, it is MUCH BETTER than the severe pain and sometimes total bedrest that was needed before my strommel punctures and the doxy-Pred treatment.

So, I started taking the doxycycline again.

Just thought I would share.

Hey Budd. What was your doxy dose? I had minocycline 100mgs a day but only lasted 3 weeks before I had an allergic reaction to something and stopped the mino. Might try it again soon though, I think it was helping. My BCL seems to be working. I havent had any significant erosions for a 24 Days today (touch wood!). But my eye is feeling pretty damn sensative today. Very light sensitive and gritty as, im hoping its just a bad dehydrated day. Or pollen in the air or something like that.. I had my Bandage contact changed last tuesday so its another week before I get my eye looked at again. The longest I went without an erosion without the BCL was 21 days. So its gotta be slightly positive huh? Im spending a bout $30 a fortnight on eyedrops though. Any one else with RCE here that has had Pinguelculas flare up because of constant eye irritation or is it just me? I think the Pings are nearly as annoying as the rces. Not quite though.;)

Just to add something to what I said yesterday. I have had a slightly swollen eyelid the last few mornings to go with the sensativity to my computer screen at work. Im hoping that its not from minor erosions happening in the night and me not noticing. I really, really want to hit the two month mark with no major or noticable erosions if Im going to continue to pay for BCLS.

MIKE do you still get swollen lids at all? I know you havent had an erosion in a while but is your eyelid still abit swollen in the mornings?

Moshpit - sometimes I get so lazy with this technique (apply artificial tears). I'm not a morning person and sometimes I'll awaken in the morning and fall back asleep for 10-20 minutes again and again for 15 min - 2 hours. When I fall asleep again and again like 4-5 times in the morning and I get a little lazy applying drops liberally each and every time I awaken, eye might get a little swollen. It's more being lazy and complacent on my behalf more than anything else.

I think there are two things that have contributed to my success - 1) I always apply drops in the corner of my eyelids before moving my eyes and 2) I almost always sleep on my stomach with my pillow applying slight pressure on my forehead (so as to help keep my eyes closed).

Best to all,
Mike

Thank you for the valuable information.
I have a question related to Muro 128 and its consecutive use with GenTeal gel. It seems to work for me so far, but... I would like to know if any of you have done such a mix.

Gradiva:

I assume you're talking about Muro ointment and Genteal gel? I still use Muro Drops during the day 5% but was unable to use the ointment. It seemed to increase the frequency of my erosions. I also used to set my alarm at 2 a.m. every morning to get up and put more ointment in. I don't anymore, I was so sleep deprived after a while, I started taking Mike's advice of keeping my eyes closed and trying to get artificial tears in through the night.

We are not Eye Care Professionals, but I strongly believe that we have to be advocates for our own healthcare. Don't let anyone minimize this condition for you. It can interefere with the quality of one's life. Try using the two products and see if it works for you. What works for one person may not work for another, but it's certainly worth a try.

Good Luck!

Anninalbany

Mike's advise is the most important. Keeping one's eyes closed while sleeping is critical - even a slight opening causes dryness in the most vulnerable spot - the 6 o'clock point where most erosions occur.

Of course the more often one uses artificial tears at night -- the better. I notice my eye starts drying out even in the evening while watching TV or reading. There is natural daily cycle when the tear glands produce fewer tears.

Mike is also right in that we can train ourselves to keep our eyelid still and closed -- avoiding the damage of pulling off epiphelial cells from the cornea. This technique, adding drops to the corner of the eye, and letting them infiltrate onto the cornea, gradually loosening the stuck eyelid, has saved me from many erosions.

I send you all best wishes for erosion free nights.


Janet

Hello All:

I'm still getting minor erosions and being awakened usually around 4 or 5 a.m. with them. I usually have gone a month or two without one during the Summer mths. then as the weather changes, I get them about once a week. I've recently been getting them every night for the past week or so. You all know that sensation of burning and soreness. I'm seeing a new Eye Dr. at the end of the mth. but will insist that I don't want my pressures checked.

The other Corneal Specialist I was seeing, said that sometimes people just stop getting erosions after a while. Has anyone heard this?

Anninalbany

I had read somewhere that for some people the erosions just disappear over time. I guess I can always hope that I will be one of them. I don't blame you for not wanting the pressure test. I'm going to be afraid to ever have one of those again but I know my doctor will want to do one at my next appointment since glaucoma runs in my family. Even the specialists I've been to for my RCE, the first thing they wanted to do was the pressure test, which of course seems to make matters worse. I did fairly good over the summer, then got an erosion a couple weeks ago. I'm not looking forward to the cooler drier weather that will be here soon.

Yes, the summer humidity really helps. I notice that my eye stays moist enough that the eyelid does NOT stick to the cornea. This will all change when we turn the furnace on -- drying out the air.

EBMD? are you still around i wanted to pick your brain about the PTK you succesfully had

Im still using my BCL and i did have a whole month without an erosion. Then things got hormonal and last week I had 4 minor erosions over 7 nights. The day my optometrist changed my Bandage Contact I had the first erosion, crushing because he had just admired my smooth corneal surface that day and told me that although he could still see rough edges under the surface (along with a big fat nerve that runs through my erosion) the surface was looking the best he had seen it. In a way im glad it happened now, cos if it happened after 2 months i would have been even more crushed but it may be time for me to start considering PTK.

Oh and JANETNY and ANNAINALBANY, Im wondering wether summer will be any better for me? because, as much as it is very humid here in NZ Ive moved to a coastal spot and its likely to be less humid there because of the sea breeze. Ive found winter bearable but my poor partner loves the fire and he has not been allowed to crank it up for fear that it will dry me out to much.

EBMD? are you still around i wanted to pick your brain about the PTK you succesfully had



Yes, I still check these boards once a week or so. Sorry to hear you had some setbacks.

For the time being, I'll check the boards daily in case you have questions about PTK for me. Hope I can be of help.

ebmd.

Moshpit - have you tried learning to keep your eyes closed, still and relaxed every time you awaken and then add artificial tears with your eyes closed? Also, don't sleep on your back and try to position your eyes in such a way that your pillow or something helps to keep your eyes closed.

Best to you,
Mike

I would be careful not to sleep in such a way that you apply too much pressure on your eyes when you sleep, that too can lead to problems.

Moshpit:

The Summer months and higher humidity is definately better for people with RCE. In the Winter, it really helps to run a humidifier. I had a minor erosion early this morning. The weather is starting to change and get drier in NY. You can try wearing a silk or terrycloth eyemask to see if it helps you keep your eyes closed. Personally, for me, I prefer to sleep on my back. Everyone is different. I notice when I sleep on my stomach or on my side, there is more pressure put on my eye, and I tend to have more episodes.

I have an appt. to see a new Corneal Specialist at the end of the mth. and will see what suggestions she has to manage RCE. I would prefer not to go the Surgery route again since I had 2 stromal punctures and a scraping (Debridement). I'm hoping Dehydrex drops become FDA approved soon! However, if PTK is going to cure this thing once and for all, I may consider it as a last resort.

EBMD, I may also be picking your brain soon too!

Good luck to everyone out there.

Anninalbany

Hey Budd. What was your doxy dose? I had minocycline 100mgs a day but only lasted 3 weeks before I had an allergic reaction to something and stopped the mino.

I was taking 100 mg twice a day.

I did that for about 10 weeks.

Then I stopped, and the erosions came back, but very minor ones. So I have put myself back on 100 mg, but once a day, and my eyes seem to be less seceptable to RCE's.

Also, in my continuing quest to find the perfect eye protection to wear while sleeping, I have found some Motorcycle Goggles and Safety Goggles that have a "CLOSED CELL" foam gasket around the edges.

These seem to be the best goggles yet that I have found to wear while sleeping.

The trick is to find goggles that are large enough to cover the eye comfortably. However, goggle manufacturers want to make "cool" looking goggles and that means smaller eye coverings.

The closed cell foam seems to work nicely, as it forms a seal, yet does not absorbe any perspiration, so they are comfortable all night long.

If you do not perspire when sleeping, than maybe open cell foam might work for you.

I believe I can mention name brands, just no links, so look up Bobster and Peepers goggles if you are interested.

The goggles seem to work for me, to keep AC out of my eyes, and keep enought moisture in my eyes.

The only wierd thing that is happening to me, and believe me, this is an improvement!!, but I still get RCE's bad enough to blurr my vision, but without any pain! Maybe a pain that might feel like a severe dry eye, but not the 2 days + of complete bed rest with eye covered that I used to experience.

I think that I might stay on Doxcycline on 100 mg/day until I run out, then I might reduce myself to 50 mg/day.

I agree that if your eye is pressed on something such as a pillow it "could" cause a serious erosion if one moves. But, what I do is place the pillow more on my forehead so there is almost like a gap between my eye and the bed (because my forhead presses on the pillow which helps apply a little downward pressure to keep my eyes closed). Either way there is very little pressure on my eyelid.

Mike

I've been getting erosions almost every night since the beginning of September, which is unusual for me. I was on Doxy 100 mg. for 8 weeks. My erosions aren't as painful as they used to be, just the burning sensation and tearing, then they resolve. When I get up in the morning, I can't even tell that I had one. However, my question is directed toward the women on this Board. Does anyone know if hormones play a big role in RCE? I am approaching Menopause and notice a change in the dryness in my eyes.

Tx. for your input folks.

Anninalbany

Ann,
I am 61 years old, post menopausal. I did not notice any problems with dry eyes until I had my first erosion August 2004. Since then, my night-time dry eye problem has progressed. I now notice that even early in the night - say about 10:00PM - before going to sleep, that my tear production has greatly ebbed. We are still in midst of summer here in the mid-South; have not turned off the air conditioning yet. The humidity is still high. Naturally, I do all I can to keep my eyes hydrated, free from drafts, wind.

Also, I really am much improved since I have weaned myself from the Muro 5% ointment at night. I have not used the ointment since February. Since then, I have had many, many fewer erosions. Artificial tear use is the my main course of treatment -- the more the better.

I also try to drink plenty of water, limit salty foods.

Have your recent erosions resu