Anyone Try CR to Cure or Manage RCES?

[mike1222]

Perhaps it's extreme but short of a Corneal Transplant or a second dosage of PTK I've tried just about everything to cure this thing and it's starting to escalate again. I suppose I could go through all kinds of rituals to manage it such as masks, sleeping in a chair, etc. but those are just not my thing.

I've tried and successfully managed RCES for four years by just applying artificial tears before moving my eyes and a year ago things changed and it just doesn't seem to work anymore. Perhaps the cells are just not sticking down as well or somethig else.

Perhaps I should consider PTK again - I just cannot believe all this for so many years is due to a simple accidental finger poke.

I had FOUR erosions last night (2:00, 4:00, 6:00 and 8:00 almost spaced evenly every 2 hours). I'm starting to think when I have a minor erosion I should just "start my day" and not go back to sleep. Last week I had one at 4am and I just decided not to to back to sleep and start the day which worked out well. But, when they happen as early as 2:00 I just get so tired. What I often try to do is lay on my back for 15 minutes so that the pain subsides and heals. The problem is if I fall back asleep then there is a likely chance it could happen again.

I just recalled - I read somewhere that applying Muro drops upon awakening 4 times (spaced 5 min apart) can stop this thing. Anyone done that?

Mike

[liz56]

Hi, Mike.

I'm sorry that this is happening to you and is so severe. Did the severity of the erosions begin to worsen and that is what sent you to get PTK or do you think that the PTK is the culprit?

We had a really smart and helpful poster a while back on this topic, and she had incredibly persistent RCE's and a terrible case of EBMD. She said something about a stem-cell study that was looking at the underlying cause of EBMD, which is often the cause of RCE's. However, I have not heard any updates. I'll look for that thread, though. There is something about the refusal of the epithelium to stick to the basement membrane that is so mysterious.

I never heard that Muro 128 5% used four times in the morning every five minutes will solve the problem, but my second corneal specialist, who put me on Dextran 10% told me to do it three times five minutes apart (for a total of a fifteen-minute project), and what it does is sets up the eye to heal better as one starts the day. Of course, this is with regular use of the drops as directed, every four hours through the day. He did not tell me, however, that it would stop the problem but just give the eye a good head start in the morning.

I hope that you can get past this problem, Mike, take care.

--Liz

[liz56]

Hi, again. I was just looking for that information on stem cells (or "goblet cells"), and I still cannot find it, but I did find this thread that I thought might interest you, Mike:

http://www.dryeyezone.com/talk/showthread.php?t=5991

--Liz

[liz56]

Okay, I found the right poster, and she went to scleral lenses; I thought that her input might be of use to you, Mike.

http://www.dryeyezone.com/talk/showthread.php?t=7105

--Liz

[mike1222]

I'm sorry that this is happening to you and is so severe. Did the severity of the erosions begin to worsen and that is what sent you to get PTK or do you think that the PTK is the culprit?

Thanks for your kind words and reply. The PTK is definitely NOT the culprit. I have had RCES for 5 years and had it fully in control until about a year ago by conditioning myself to awaken eyes closed still and relaxed and then adding artificial tears in the morning before moving my eyelids so as to keep the "stuck feeling eyes" from rubbing off the epithelium. For some reason a year back the condition worsened and it started happening with increasing frequency and intensity. I remember a year back awakening with absolute STABBING pain for 15 minutes that was absolutely horrendous. I had the problem so under control until then. From that point forward it was happening with Muro 128, happening under bandage lens, in dreams, it was just unstoppable. Then the doc did a scrape which stopped it for a week and then he did the PTK.

Here's the interesting thing, the PTK stopped it for about a month then the doc said the erosions moved from 7:00 to 5:00 (so they were happening in another spot on my eye). I'm thinking about having another PTK as I've heard PTK is 90% effective the first time and up to 99% the second time.

There is something about the refusal of the epithelium to stick to the basement membrane that is so mysterious.

Agreed - that's the entire cause of the problem.

I never heard that Muro 128 5% used four times in the morning every five minutes will solve the problem, but my second corneal specialist, who put me on Dextran 10% told me to do it three times five minutes apart (for a total of a fifteen-minute project), and what it does is sets up the eye to heal better as one starts the day. Of course, this is with regular use of the drops as directed, every four hours through the day. He did not tell me, however, that it would stop the problem

I think the idea behind both the Muro and Dextran is to dehydrate the cornea so as to allow the cells to get a better adhesion. I know for fact Muro works for many and completely stopping the problem which is why it is a "first course" of action for treatment. Problem is some docs don't do anything after that if it fails.

I've tried just about everything else including doxy steroid combos etc. But, I haven't tried Dextran 4 times in the morning spaced 5 min apart. Are you suggesting to do that along with 4 times a day? The idea is to allow the epithelium to get a better adhesion so as to allow for permanent healing.

Do you know if you can overuse the dextran? My doc has told me you can use Muro and artificial tears as often as you like and as long as you like.

Thanks,
Mike

[liz56]

I've tried just about everything else including doxy steroid combos etc. But, I haven't tried Dextran 4 times in the morning spaced 5 min apart. Are you suggesting to do that along with 4 times a day? The idea is to allow the epithelium to get a better adhesion so as to allow for permanent healing.

Do you know if you can overuse the dextran? My doc has told me you can use Muro and artificial tears as often as you like and as long as you like.

Thanks,
Mike

Hi, Mike.

Sorry for being unclear. Correction: The doctor, who put me on Dextran 10%, told me about the Muro 128 5% three times in the morning. Looking back, that was a very bad sentence-- long day at work! lol

I do not know about overusing Dextran. My corneal specialist told me that people had been on it for years; the length of time on it seems as though it can be unlimited, but I am not sure about using it too many times in a day.

Dwelle does the same thing as Dextran, and as I was weaning myself off of Dextran, I replaced those drops during the day with Dwelle. My doctor said that it was okay to do that, and I've been on Dwelle ever since.

I hope that you find something that works. I know exactly what it is like to be awakened multiple times, due to erosions, and no one appreciates sleep like I do these days, after being deprived of it so much for many months.

Take care,
Liz