Recurrent corneal erosion sufferer

[liz56]

Hi, Mcgoldilocks.

I was afraid of infections, so I did not try the BCL. However, when my corneas were so sensitive and compromised, I wore swimming goggles in the shower, even though it made washing my hair a big hassle. At least I felt like my eyes were protected.

Good luck with your new line of treatment. I hope that it works!

Also, have a great trip to Morocco!

--Liz

[Mcgoldilocks]

Thanks Liz! I've ordered Tranquileyes which I'll use dry, eyelid cleansing wipes and I'm going to buy a pair of goggles for the shower. I do NOT fancy having an erosion in Marrakech.

It wasn't a difficult decision for me to try bandage contacts, even with risk of infection. Other people use them all the time just for cosmetic reasons, so they can't be that bad surely? Plus I'll be taking loads of extra precautions. Your erosion rate seems worse than mine (once per month at the moment), have you found a way to live with this condition?

[liz56]

Hi, Mcgoldilocks.

Yes, my erosions, when they were really bad were happening a few times each week, and sometimes up to three times in a night. I was so fearful to sleep and getting quite out of whack for lack of it. This was in June of last year, and it lasted through November. It was just awful. My erosions have really lightened up, and, like I mentioned elsewhere, I have only had three since the beginning of 2008-- January 4th, January 27th, and March 15th. All of them were not very bad in terms of degree and happened in the morning, as opposed to in the middle of the night as they had earlier in the ordeal.

I had been using Dwelle throughout this time. It took Dwelle many months to really work, but it has. I use it about five times a day and awaken at least once each night to re-apply it and some Genteal Gel. I also use Tranquileyes. This program seems to be working for me, but it takes lots and lots of time for the eye to heal up. I still feel that raw spot when my eyes are tired from being awake for too long or being in dry or windy conditions. I am nowhere near being out of the woods yet, but things have improved a great deal.

I know that BCL's work well for a lot of people, and I'm glad to hear that your plan is working, and I sure hope that it continues to work throughout the duration of your trip and beyond!

--Liz

[Mcgoldilocks]

Is Dwelle suitable to use with contacts? I could give it (Clinitas Ultra 3 in UK) a proper go this time as I haven't been prescribed any particular kind of drops, she just said 'make sure they are preservative free'.

[liz56]

Is Dwelle suitable to use with contacts? I could give it (Clinitas Ultra 3 in UK) a proper go this time as I haven't been prescribed any particular kind of drops, she just said 'make sure they are preservative free'.

Given the amount of residue that I get on my lashes from Dwelle, I don't think that it would work well with contacts. However, I gave up contact lenses a long time ago because of (self-diagnosed) dry eye. So, I am not sure.

Any contact wearers / Dwelle users here who can speak to this question?

--Liz

[Sorriah42]

Hi all. I'm new to this Board. Can someone tell me what Dwelle is? It sounds like it works for a lot of people and I've never heard of it.

OK, here's my story. I had my 2nd baby in June, 2006 and soon thereafter started experiencing dry eyes and was improperly diagnosed with dry eyes. For the next year, that's what I thought it was. Mostly I had issues in the morning, which makes sense, but one day I started having pain at about 11 at night and the pain was so severe that I didn't sleep at all.

I thought I was going to die, or at least wished for it in that moment. At the ophthlalmologist the next day I was diagnosed with Map Dot Fingerprint Dystrophy. Advil helps the pain and I was told to use Lacri-lube every night and that if it didn't work, I should try ductal plugs (which I haven't yet). It's only gotten worse since then. I, like others of you, am also afraid of sleep. I dream a lot and I never know when I'm going to open my eyes in the middle of the night and have an "episode".

It's been almost a year since I've been diagnosed with the MPFD and I get about 1-3 episodes a month. If I don't "blink with my eyes closed" to lubricate my eyes, it's almost a sure bet that I'll have an episode.

I hadn't heard of the contact bandages before. Would using regular contacts work? I've been dealing with this pretty well I think but think maybe it's time to see a different ophthlalmologist, since I'm not the happiest with the last one I've seen.

[liz56]

Hi, Sorriah42.

I'm so sorry to hear that you have abmd / mdfd. I have it, too. There are lots of different treatments for it, and your doctor should work with you to develop something that works for you. Some doctors prescribe an OTC drop, called Muro 128 5%. There is also an ointment form of it to use at night. A lot of people like that. BCL work for lots and lots of people. They are not for me. I don't want the hassle and fear infection.

It's really good to find a doctor who understands. I found one after going to five others and travel out of state to see him.

My erosions started slowly but rapidly came closer and closer together. It took me months before I could sleep without an erosion waking me int he middle of the night, sometimes only after two hours of sleep.

That said, Dwelle eye drops, which are available only here at the DEZ in the Dry Eye Shop, worked for me. Dr. Holly has lots of good information on his area, discussing exactly how they work. There is no one better to ask about the drops than he.

However, I want to note that it took months for them to work fully in my case, and I think that I am still in a recovery mode, though I have had only three erosions since January. If you are interested in trying them, I was told to apply them at least five times each day. I also apply them when I wake up in the middle of the night, if I do wake up. And, I use Genteal Gel (severe) at night and often apply it mid-way through the night, too.

My eyes still burn and hurt a lot, but I can sometimes go for hours without any problem. Things are getting better, but it is a slow process for me.

I hope that you find success with whatever treatments you decide to use.

--Liz

[Sorriah42]

Thanks Liz,

I think I'll try finding a new ophthalmologist who understands the condition a bit more and can put up with my issues sitting in the chair. My doctor had poor bedside manner when I had issues with a bright light being shone in my eye and my sensitivity to what I was being told. I think I am fortunate in that I don't have that many issues during the day. As long as I don't have an erosion in the morning (much better term then "episode") I'm fine. Sometimes a bit dry, but nothing that holds me back. With two small children, I can't even let days that I have an erosion hold me back, so I just deal with it best I can. I don't think I'm going to switch drops until I speak to a professional, but at least now I can go in armed with information.

Thank you all for your support. I hope I can be here to do the same for you.

[Mcgoldilocks]

Regular contact lenses won't help, I asked my doctor the same thing. They have to be the kind you wear continuously, as the point of wearing them is that they offer protection to your cornea in the morning when you need it most. You can still have an erosion if your epithelium is particularly loose, or if something gets under the lens though.

I've been wearing mine for 2 weeks now and I had an erosion after 5 days.

In any case, you need to get a contact lens specialist at a corneal clinic to check you can get away with wearing them. They are a bit of a pain in that you need to be very careful of infection - I use a sterile eyelid wipe every night, rinsed off with bottled water, and I can't get tap water in my eyes or go swimming.

They're better than nothing.

I can't imagine how you get through the mornings with small children! That is one of my biggest fears with this condition, at the moment I just take a day off sick when it happens but you can't do that with kids. Mine are so bad that I'm practically blinded though, so I reaaaallly want to get it sorted with surgery before I have babies. It doesn't help that my mum suffered with dry eyes during her pregnancies and couldn't wear contacts at all, great, I've got that to look forward to as well.

[Sorriah42]

Thanks for the info. on the contacts. I think no matter what I'd wait until after the summer. No matter how bad the erosions can be, it would kill me not to swim with my kids. How difficult is it to shower with the lenses on and can they be made of a prescription strength so that glasses wouldn't be needed? Has anyone had the ductal plugs?

I had requested my chart from the ophtho. that diagnosed me and I finally received that so I'm now going to make an appointment with a specialist. I have awful, awful insurance so I hope they don't charge an arm and a leg.

Mcgoldilocks - When you do have children you'll find that you can't even take a day off for a cold, but you figure out how to handle it - a lot of t.v. and snuggling and mandatory naps My husband helps out a lot too, but there's never really any down time. It's been very, very humid lately so that may be slightly helpful right now - not as much as I thought it would be but no major erosions for 2 weeks now.

I'm sending good vibes to everyone who has any eye problems this morning.

[Rebecca Petris]

Good call. It's got the same oncotic pressure as Dwelle as best I recall, and is a lot more practical to use than ointments. Muro 128 is hypertonic and it's believed to be much more effective for this purpose than conventional OTC lubricants but it still has relatively limited action.

[Randal]

Rebecca, I think I missed a post. What is it that has the same oncotic pressure as Dwelle?

Thanks.

Randal

Good call. It's got the same oncotic pressure as Dwelle as best I recall, and is a lot more practical to use than ointments. Muro 128 is hypertonic and it's believed to be much more effective for this purpose than conventional OTC lubricants but it still has relatively limited action.

[Rebecca Petris]

Whoops!

I just realized I was replying to a post at the end of the FIRST page of this thread, which was three months old! (Where McGoldilocks was asking about Dwelle etc vs Muro 128 then ordered Clinitas Ultra 3).

Sorry for the confusion! I think I clicked on the thread because there was a fresh post but accidentally ended up on the first page thinking that was the latest.

[2catsonEmerald]

I have it too! Yuck!

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 and 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! I'm afraid to open my eyes in the morning. But just so you know, the laser surgery doesn't work for everyone. Good luck to you.

[Sorriah42]

I hope you start feeling better soon. Just a suggestion - before you open your eyes in the morning, blink a bit or, with your "good" eye, look at a light to get your eyes tearing. That might help a little - not much but a little.