RCE - I have it too! Yuck!

[2catsonEmerald]

I scratched my eye about 15 years ago and about 5 years ago I woke up in the morning and felt like it was scratched again - very painful. Went to the eye doctor and said I had recurrent corneal erosion. Wonderful. Told me to put Muro 128 5% ointment in every night for about 3-4 months, which I did (some times I would go for a week with no pain, then it would start up again), but after 4 months it seemed healed. Then the next year it happened again. Very uncomfortable, painful, watery eye!. So I put the Muro in for 4 months and then it was ok again. Did this for 5 years, then I got tired of it. My eye doctor recommended PTK laser surgery which is supposed to correct this in 80% of people. So I said, what the heck, I'm tired of dealing with it. So I had it done. The corneal surgeon scraped the little pieces of the top layer of eye that were hanging (which causes the pain) and lasered it, put a contact lens bandage on it for a couple of days. The surgery only took 5 minutes and was no big deal. After the surgery, I had to put drops in every hour and Muro ointment every night. I was doing great for over 2 months, then I woke up and felt like I had razor blades in my eye. He said the erosion had recurred so I ended up missing 2-1/2 weeks of work and he had to put a patch on my eye so it wouldn't be opening and blinking. Then it was ok for 4 weeks and it happened again the other day. I went to the eye doctor and he said there were just a few little pieces hanging this time (but it still hurts like hell!), but as the day went on it felt better. He just said to put the Refresh Celluvisc drops in every hour and Muro ointment at night. That's about all you can do. I'm hoping one day it will just stop, but I know what you mean - it is so painful and uncomfortable and your eye just keeps watering constantly - it's hard to do anything, especially work! But just so you know, the laser surgery doesn't work for everyone. Good luck to you.

[liz56]

Hi, 2catsonEmerald.

I have not met many people who have gone through with PTK, so it is helpful to hear your story. I have heard that some people need to have it done more than once for it to work. I don't know if your doctor mentioned that.

I'm sorry that you are still having erosions. I was told to keep using drops (though I use Dwelle rather than Muro 128 5%) even after it all improved. So, I have been. It's been five months out for me since my last erosion, well, five and a half. (Knock on wood!) I just resigned myself to the fact that I will have to maintain this for the long term. It is not pleasant, but at least it seems to be working. I'd love to forget about it and just sleep like I used to. However, when I really remember back for the last nine years, I do remember burning, tired eyes. The drops (Dwelle) help me with that, so overall I am doing better.

Try using the Muro drops even when you feel great. Doctors have told me to keep using drops at least for three to six months after the last erosion. I'll probably just use them all of the time beyond that. I like their effect for dry eyes, anyway.

Good luck, and I hope that you get your erosions back under control.

--Liz

[Rebecca Petris]

Welcome 2cats. You're in good company here... as you've seen, lots of folks with RCEs.

I'd like to encourage you to poke around and read what others are doing for their RCEs. Sometimes the devil's in the details, and there's lots to explore, from bandage lenses to different lubricant products to tips on how to open your eyes in the night or morning without precipitating an erosion to night coverage products that may also help.

[2catsonEmerald]

Thanks Liz and Rebecca, I have been reading the blogs - I just found out about this site. So it's all new to me and very interesting - also to know that I am not the only one that has this stuipd eye thing. I hate it. I am very interested in trying the Dwelle, I hate putting ointment in my eye every night. I wake up and roll my closed eye and then open my eye very slowly and hope it doesn't happen. It never starts till about 1/2-1 hour after I get up, so at first it feels good, then wham! it hits you! It just ruins your whole day. The PTK surgery seems like it made it worse. The erosions are MORE painful and are happening more frequently so anything to stop it would be great. Although I just had the PTK done at the beginning of May, so it's only been not even 4 months and the doctor said it takes 4 months to heal, so maybe the last 2 erosions are delaying the healing. But all I know is that my vision is very blurry in that eye. Where do you get Dwelle (I am going to see the eye doctor next week and would like to ask him if I can take that. Every time they have tried to put contact lens bandages in my eye, they have a hard time. My eyes are very small and it takes them about 5 tries and someone else coming in to hold my eye open to get it in, then it usually pops out. So I don't think that's an option for me. And last month when I had the erosion, the doctor put a lens in and it didn't help, it still hurt, so that's when he patched it. Luckily after 5 days with the patch, it had healed. The erosions never happen during the night, only when I wake up in the morning, that's why I'm afraid to go to sleep, never knowing what the morning will bring, a good day or a bad day. The doctor did mention that some people have the surgery done more than once, but I'm afraid it will get even worse if I have it done again. The first one didn't work, so how could it work if I had it done again??? I'm scared to death of messing with my eyes anymore. I don't want to lose my sight. Do you use drops during the day and ointment at night? Or do you just use the Dwelle drops during the day? I just ordered some Muro drops, I've only used the ointment before, never the drops. I'm so confused about all this, drops every hour, ointment, then I still get the erosions. I know I will probably have to use something the rest of my life, so even if it stops I will continue with something because I never want to have this again. I never had any problem with my eyes until 5 years ago with the first erosion, then it started happening every year. Will it ever end???

[liz56]

Hi, 2catsonEmerald.

I'm really sorry to hear all of this confusion and fear. It sounds so familiar to me, and I still have those feelings. There are lots of things you can try, and the best way to handle erosions is to experiment and then see what works best for you.

I do not use ointment. I use Dwelle all day and just before bedtime. I also use Genteal Gel about fifteen minutes after my last application of Dwelle, and I wear Tranquileyes goggles to keep my eyes closed and moist through the night. Both Dwelle and Tranquileyes are available through Rebecca's Dry Eye Shop.

One thing that I just thought of-- I got a tip from my second corneal specialist, the one who really helped me a lot, and he said to use the Muro 128 5% drops three times-- once every five minutes, for the first fifteen minutes after waking. I never tried it, because my problem happened in my sleep, and I was on a program of osmotic drops, like Dwelle, when he mentioned it. However, since you get your erosions after having been up a little bit, it might be worth trying, especially since it sounds like you were going to get them anyway.

--Liz

[bernmee]

Hi,

I am not an erosion specialist, though I did have severe ones every two nights for three weeks after having Lasik, and I thought I was going to die!! I had my Bandage Lens in for 10 days or so, I refused to let him take it out as I was peeling my eyelid of my eyeball in the morning, I fuigured better to have the lens in between!

What are you eyes like other then the erosions...do you have dry eyes or do you have good moisture?

Dwelle seems to be something that alot of people on this site use. I use it during the day and genteal pm Gel at night. I used the Muro ointment for a couple of weeks prior to the lens and I have to say I hated it, I felt it made my eye so much worse and irritated.

Right now I am on Doxy (a type of antibiotic) to help me with blocked oil glands in my eyelids. When it was prescribed the Dr. told me that one of the side effects of Doxy was that it helped the eyeball bond back together. I have not seen this on the posts from the more long term suffers, but maybe it is something you could ask your Dr about. I am not usually someone who takes medication but if it helps with eye pain I would do ANYTHING!

[2catsonEmerald]

Thanks Bermee and Liz56

Wow, this is great you guys. I finally have some people who know what I'm going through. First, Bermee - My eyes are usually fine when I don't have the erosions. Not dry at all - I never had dry eyes. Actually they usually water alot, they're pretty sensitive though since I scratched it 15 years ago. I will ask my doctor about Doxy - sounds interesting. I agree, I will do anything to not have that pain!
Liz56 - I printed out the info on Dwelle and will take it to my doctor next week to see what he says. Also the Genteal Gel may be worth it too. I hate putting Muro in my eyes. So you put the gel in at night? Thanks for letting me know where to get it. That would be great if it works. And I'll also try the Muro drops 3 times in the morning once I get them. I should get them any day, I bought them on E-bay. And I'm glad for you that you haven't had an erosion for 5-12 months. That's great. Hope Dwelle (if my doctor says I can use it) works that well for me. And the goggles sound like a good idea too. As you can tell - I'll try anything to get rid of this pain!!! Thank you so much! I appreciate your help. I'm having some trouble figuring out how to maeuver on this website and find my blog and people that responded to it. It took me about 20 minutes to figure it out and find it. I don't know if I remember how I did it, so I'll have to figure it all out again next time! Duh! Good luck to you both with your erosions and hopefully soon none of us will have it! Doris

[bernmee]

Hi,

I should just say that my erosions were caused by Lasik, and my present dry eye is cause by MGD, blocked oil glands, and Doxy is supposed to kill a bacteria (that is causing redness in my face, rosacea) that in turn should unblock my glands, the eye ball bonding is a pleasaant side effect.

You should got go to the home page and go into the "patient section" in the first section. Look for a list of symptoms of dry eye. One of these is watering. I didn't look into how this works but I'm sure the reason for watering is given somewhere. Therefore you could have dry eyes while having watery eyes. "Dry eye" is a catch all phrase for a number of eye conditions. You could have lots of tears but the oil content of them is not correct...and still have dry eye. Look a little further into this.

Lis56 has some excellent posts regarding erosions, if you click on her name at the top left hand of her post a box will come up and you can then click on "all posts" this will give you some good ideas.

I think it is fair to say that almost everyone on this site is taking some form or another of Omega 3 oils. If you google these oils in relation to dry eye you will see that it is the first palce to start. And even if you don't have "dry eye" you have nothing to use by taking this supplement. Also have a look at your diet. "dry eye " is often linked to inflammation, so looking at your diet and trying to follow an "anti inflammatory" diet might be a good idea. You may not have "dry eye" but if you are healing it is a good idea to look at your diet, but wither way you should start taking omega 3 oil.

And having said all that I am about to have a bowl of rice pudding made with sugar and cream...

Good lcuk.

[2catsonEmerald]

Thanks Burmee, so no Doxy for me, but I will ask my doctor about Dwelle. Maybe I do have dry eyes, I know my mom had dry eyes, she always used Tears Naturelle. She has Alzheimer's now, so I can't even ask her :-(. But maybe I'll try the Omega 3 too. There is so much new stuff I can try that I found out from you guys, I hope something works. Thanks!! Doris

[bernmee]

maybe Doxy would be for you, when it was prescribed the Dr. did say that one of the side effects was that it helps the eye ball to bond back together...so in my case I get a two for one special. I just have never see any o e other RDE posts mention this...maybe you could ask and see what they say.

Good luck,

b.

[2catsonEmerald]

I will ask him. Thanks Bernmee~! My eye has been good since last Friday but my other eye keeps watering. Weird. Sympathy watering or something. Anyhow, hopefully my doctor will say I can try one of these things - I have a list I'm going to take with me when I go on Tuesday. I'll keep you posted. Doris

[2catsonEmerald]

Hi all, I went to the eye doctor today, and he said I could try the Dwelle instead of Celluvisc during the day. He also said that he wants me to keep using the Muro ointment at night, not the Genteal Gel. Also was glad I brought up about the Omega 3 - he sells it there and highly recommends it so I will start using that. He said the Tranquileye Goggles were a good idea too. So I will start trying these new things that I learned from all of you and hope they help. My eye is still doing ok since the last small erosion 11 days ago so hopefully it will stay that way. Thanks everyone! Doris

[2catsonEmerald]

Another RCE

Well, I went about 7 months without an erosion, and I think because it was feeling good, I got lazy about putting my drops in. So this time, the eye doctor put a patch on my eye for 4 days and it was healed. He now has me on Doxycycline for a few months, Muro 128 5% ointment at night with a patch, and Muro drops 4 times a day, plus my Dwelle drops in between. So we'll see how long it lasts this time. Hopefully the Doxy will help, plus I've been taking Omega 3 Fish oil for about 6 months....praying all this helps!

[liz56]

I'm so sorry to hear this, 2catsonEmerald! I've heard really good things about doxy drops, and not just anecdotes. when I was stuck in the erosion cycle, I was reading a lot of studies, and they all note the success of the doxy drops but the return of rce's once the drops end. It's too bad that they cannot be used all of the time. However, Dr. Holly gave us Dwelle! So, I hope that it will be in stock soon so that you can have it after the doxy treatment.

You know, when I feel okay, it is so tempting to forget about it; however, I think my problem is bad enough that it does a fairly regular job of reminding me that my eyes are not quite right, even when they feel their best (and, I mean their best and not the best!).

Best wishes,
Liz

[2catsonEmerald]

Thanks Liz,
My doctor has me on doxy pills, not drops. I didn't know there were drops. I hope the RCE's don't come back after I stop taking them. He told me to stay on them for about 3 months.
And yes, I'm hoping that the Dwelle drops come in soon. I still have some left, but I'm getting close to running out. I hope when they do come in they don't get sold out really quick and I don't get them!
When my eye is healed, it feels perfectly normal, that's why I forget about the drops. There is no dryness that I can feel or scratchiness, so I always think it's ok to go without the drops. I think I learned my lesson!
But at least I went 7 months without an erosion so that's a good thing. If I can just double that each time, that would be great! But it's the worst feeling. I got layed off from my job after 20 years in November and had my first interview at a hospital for a really good job 2 weeks ago. The day after the interview was when the erosion happened, and I was supposed to go in to "shadow" the job last week. Needless to say, I couldn't go, so I lost that job because of my erosion. Bad timing! It feels great now, but too late for the job! Oh well, hopefully it will get better for all of us!