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
Dry Eye Patient
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?
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
Last edited by liz56; 20-May-2008 at 10:24.
Dry Eye Patient
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.Originally Posted by Mcgoldilocks
Any contact wearers / Dwelle users here who can speak to this question?
--Liz
Dry Eye Patient
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.
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
Dry Eye Patient
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.
Dry Eye Patient
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.
Dry Eye Patient
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 napsMy 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.
Administrator
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
The Dry Eye Zone
Dry Eye Patient
Rebecca, I think I missed a post. What is it that has the same oncotic pressure as Dwelle?
Thanks.
Randal
Administrator
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.
Rebecca Petris
The Dry Eye Zone
Dry Eye Patient
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.
Last edited by 2catsonEmerald; 01-Sep-2008 at 19:27.
Dry Eye Patient
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.
Dry Eye Patient
Hi,
I had a similar problem and went to many specialists and paid alot of money to no avail. I then went to a chemist to get eye ointment and she asked if I had seen the optometrist upstairs. I didn't even know there was an optometrist upstairs from the chemist. I booked an appointment which did not cost me a cent. He did some research for me and spoke to someone from a hospital in Sydney who forwarded some information to him on a trial which they did on patients and it seemed to have cleared up the situation. My eyes had been ripping open on a weekly basis and sometimes I could not see out of my eyes for a day or two and had to get corneal scrapes etc. My eye has not ripped open and it has been nearly six weeks. I am taking tablets which they use for Malaria called Doxycycline 50mg. I am to take them for approximately two months in conjunction with eyedrops FML Liquifilm Eye-Drop 0.1% (fluorometholone). I use the eyedrops 4 times a day to start with then near the end of the course I go from 3 times a day, then 2 times then once. I am so far at 3 times a day and have approximately 2-3 weeks left of the course. I also use genteal gel at night and have noticed the change dramatically. It is worth a try, as it seems to be working for me.
Hi, Critter.
I'm sorry that you are suffering from RCEs but have found something to help. I hope that your good progress continues. Thanks for sharing your story!
--Liz
Dry Eye Patient
Hi all
I completely sympathize as I have EMBD and used to suffer regularly from RCEs. They were worse in the winter and when I was traveling. My solution has been to use the Muro 128 ointment every night in the affected eye. I put a nice big glob in there, and (fingers crossed) have not had an erosion for 8 months and counting. I get a prescription for it since I am then able to claim it on my health spending account, but it is available over the counter.
I know others have already mentioned this solution but just wanted to add my two cents. During the day, I use drops (different types) as required, and preservative free drops if I am having to use it multiple times a day.
Good luck to everyone!!
Hi, Katie333.
I'm glad that things have improved for you! It's good for others to hear about successes!
Thanks for the update.
--Liz
Dry Eye Patient
hi friends ,,first of all i am very happy to see you and read your messages and very sorry that you all suffering from a very bad eye condition like me ...
I am a Dentist and i am in this profession for last 10 years ..during my collage time just because of some lack of care, some foreign body was entered in my eye and this story began...
firstly every 3-4 month this erosion occurs and that is in a alternative eye ..never ever in same eye ...i need to suffer 4-5 days with eye patches and lubricant nothing just sleep on bed and pray to god ....
but now i frustrate completely frustrate with my eye... even i talked to all Ophthalmologist for my condition to my city ...but from every when i fell nervous nobody help me so this time i think i need to help my self only
now a days nearly every 2 month , i fight with this monster condition .... just yesterday i recover from it now i have two month more to help my self
study shows that use of tetracycline medicine orally and certain corticosteroid will help us ,,first of all i try on my self and then let you know
you can contact me on mehulbds@hotmail.com
bye so see you soon just prey for me and for my eyes
-Mehul
Dry Eye Patient
Hi All,
My heart goes out to everyone here suffering from this terrible and misunderstood disease. Finally got my own RCE under control, and wanted to share my story in the hopes someone will find it helpful. I have had RCE for 6-7 years. Started with sharp stabbing pain in the mornings in one eye that lasted ~30mins, didn't see a doctor for a while and thought I'd "tough it out," one day it got infected and the pain was unbearable and couldn't see or function all day. Went to several doctors, received several different diagnoses -- I found that most ophthalmologists didn't seem to know much about the condition, it's not that common and not life-threatening and doctors tend to treat it as "no big deal" without understanding the fear/anxiety of never knowing when you're going to wake up in excruciating pain. Was eventually put on Muro 128 5% NaCl ointment like many others here, which worked so-so but I still had attacks, some of which got infected and were terrible. Tried many alternative ointments and drops (Visene, Systane, Muro drops) with no success. Went to some other doctors, was given a protective contact, that didn't much work either. Most doctors told me that the condition would go away after a while with no attacks, so occasionally, after a while with no attacks, I'd stop whatever I was taking and lo and behold had another attack soon after. Or, I'd be applying medication to one eye only and have an attack in the other eye.
However eventually I was able to get my RCE under control. What did it for me wasn't any miracle cure or new treatment but returning to my old Muro 128 5% NaCl, which of everything had worked the best, and being VERY SYSTEMATIC AND DILIGENT in applying my medication. I began to HEAT THE OINTMENT to BODY TEMPERATURE by warming it in my hand first. (At room temperature the ointment tends to glom up and doesnt spread well.) I always apply ointment to BOTH EYES. I always apply TWO SQUEEZES AND ONLY TWO to each eye -- one in each corner of the eye (both underapplication and overapplication dont provide good coverage). And I apply the ointment EVERY SINGLE NIGHT RIGHT BEFORE BED, whether I'm experiencing symptoms or not. I make sure I always have a spare bottle on hand in case I run out. When I'm in a situation where I think an attack might occur (e.g. long plane ride) I usually apply some Muro. Most of all, I have changed my attitude and come to accept that RCE will be a disease I will have for THE REST OF MY LIFE, and so I need to just treat the medication process like a daily ritual.
This has worked for me and I haven't had an attack in 3 years. Applying eye ointment requires a certain amount of technique - it's not just like swallowing a pill - and doctors tend not to be aware of these little tips and tricks, so I hope this is helpful for some of you. Of course different people will have different manifestations of the same disease so what worked for me may not work for everyone. But I encourage everyone to ask themselves again how diligent they have been with their medication and to consider giving Muro a really fair and thorough trial before trying more expensive and invasive treatments. Just to reiterate - I've controlled my RCE with just daily pre-bed Muro ointment (not drops), applied very carefully and consistently as described above, no other treatments.
Anyway, I hope this has been useful for someone. I struggled with constant attacks for 3-4 years before I got my RCE under control, and I just hope I can shorten that time for at least one person.
EyeOD
I find it disheartening to see how many patients have attempted to seek help, but to be given lacrilube etc and told thats it. RCE is a depressing condition that can seriously effect peoples lives, I have personally seen people losing their job and relationships due to their "fear" of sleeping and having an attack, so they sleep very poorly, which leads to bad moods, poor productivity etc.
There are ways to manage RCE's, and there was an excellent post on page one which summarised some of the options.
I just cant believe how some eye specialists seem so useless in regard to RCE.
I am so glad I found this site! I have suffered since the late 80's. Tried everything! My thoughts are with you all, because I feel your Excurciating pain on an almost daily basis! My latest try is Fish Oil gel tabs, someone told me they work! Worth a try and the best ones to try are Arctic Pure Omega 3. Special thanks here to Rebecca for your heartfelt concern about my well being! Thank you so much!
I will give muro 128 ointment another try, I had difficulty applying it, sticks to eyelashes and not eye. Heating sounds perfect. I need help bad. Thank you!
I had ducts plugged and therapeutic lens, neither helped me. In fact I had to have lens taken out in E.R. They hurt so bad.
Dry Eye Patient
I would like to say THANK YOU to rce_in_nyc for writing this very helpful post. I have now been putting Muro 128 Ointment in my affected eye nightly for 5 months... and have NOT had one instance of RCE!!
I was previously getting increasing episodes of RCE in the one eye up to several times per week. I feel very fortunate to have found this information within a year and a half of my initial episode, and not having to endure years of pain as you did.
To anyone still suffering from RCE, please give the Muro 128 Ointment a chance. Like the poster said, it takes a bit of practice, but eventually it becomes total habit. I have acquired my own technique... I put the ointment in my pocket while I'm brushing my teeth. The couple minutes in a warmer place seems to be just enough to make it easier to 'detach' the string of ointment. That's the tricky part, shaking the tube just properly to get a few millimeters of ointment in the lower eyelid (while pulling down the lower eyelid with a finger) without poking your eye out!
After the bit of Muro ointment is in the eye, I start rolling my eyes all over the place while keeping them open (or closed if you wish)... look up, then down, then left, then right, etc., and pretty soon the vision in that eye gets nice and blurry and I know the ointment has spread out properly instead of simply getting pushed to the corner of the eye.
One more tip with the Muro 128 ointment... it comes in a little metal tube. I thought the pricetag of ~$25 was rather expensive, but now happy to report that 1 tube actually lasts about 6 months! But do note, the metal tube is prone to developing little cracks from getting bent back-and-forth. Just wrap some scotch tape around the tube when this starts to happen (or before) and you'll avoid the concern of contaminating your sterile ointment with bacteria.
FYI I did a follow-up appointment with my eye doc even though I was having no issues... he confirmed that the eye now looks perfect with no sign of any erosions (that was not the case in the past). I told him I have been using Muro 128 ointment nightly and he was rather intrigued, seeing as this is not the typical use for this ointment. According to his thinking, 'dehydrating' the cornea should cause more episodes of RCE, not less. But as they say, the proof is in the pudding, and he said keep on doing what you're doing because obviously it's working! Hopefully he will now be able to recommend Muro to other RCE sufferers instead of prescribing petroleum-based ointments or thick eye drops which don't suffice.
With regard to using Muro 128 on a daily basis, all information I have read and my eye doctor's input also indicate that it is a safe ointment to use for as long as needed with little to no side effects. After all, as I understand it it is little more than a saline-water type of solution. However, there is one possible 'side effect' which I read about and has since happened to me, and that is that my vision is actually slightly BETTER in my previously-affected eye to which I now apply Muro 128 ointment than in my non-affected eye. It is slight, but definitely noticeable. My doctor didn't believe me until he had me read the eye charts from across the room with each eye separately, and I was able to read an entire additional line of letters with my affected eye!
Thanks for all the information provided here, I hope others are able to have similar success in their experience with recurring corneal erosions.
DryEyeTalk Newbie
I know what you are going through. I dealt with RCE for 2 years. Every now and then after having my contacts in for 15 or 16 hours, and falling asleep on the couch, i would get up to take them out and along with them would come the entire surface of my cornea. We have all gone through it and know what that feeling is like and the next weeks or months to follow. I received treatment for this for a couple years. Nothing seemed to work. Kept happeneing because as soon as i would get better my Doc would put me back into contacts and eventually this happened again and again. Finally, I got referred to a doctor that decided it wasnt improving and contacts were the cause along with my dry eyes. He decided to scrape off the entire surface with a scalpel type tool. He said the reason the new cells werent growing back properly is because when the epitheleal would get ripped off, some of the remaining cells would be abnormal and the new ones would have trouble lining up perfectly. So he shaved them all off. This allowed all the new ones to heal in nice and smooth and correct my blurriness. Every time that mine would heal up my vision would still be blurred terribly. I had the scraping/shaving procedure done about 5 months ago and im pretty much back to 20/20. He says there is still a little irregularity in the upper part of my cornea, but its out of the field of vision so my vision is no longer blurry. Centrally its very smooth. So those of you still suffering might want to talk to your docs about the scraping procedure. I know it sounds awful but it works. Also - I can no longer wear contacts for the time being. Its just not worth it to risk having another RCE. My doc says he would never put them back in if he were me. Also not a candidate for Lasik yet for obvious reasons. Hope it gets all healed up so i can get it done.
Last edited by Jay Hewitt; 10-Oct-2012 at 15:09.
Dry Eye Patient
I have suffered from RCE every so often, like every 6 months, but then started using muro128 ointment before going to sleep, and hadn't had an episode for over 2 years, but then suddenly I just had another episode. I thought the muro128 treatment had solved problem and was upset to suddenly have episode again.
Dry Eye Patient
I am also one of those who can testify to the success of Muro 128 ointment during night. In my case, corneal erosions started occuring precisely after chalazion excision surgery on the upper eyelid. I am farily certain of this because they only occur in one eye (the one where I had the chalazion). If I had only known that corneal erosions could be a possible consequence... I would have definitely continued warm compresses and explored other options instead of rushing with a surgical procedure. Thanks, doc!
The situation is worst at night/in the morning upon waking up, with symptoms as described by others. With Muro I usually don't need to worry if I will be in pain when I wake up (I might still get an erosion sometime -- I haven't been able to figure out the reason for this -- but they are less painful). Lately however I have become somewhat worried if there are any consequences with long-term Muro 128 use, and I've tried to substitute it with other ointments (Genteal, Systane...), but these did not perform very well (I would wake up with a feeling of soreness and the erosions seemed to be more frequent). So for the moment, I am sticking with Muro because it is at least effective. I would welcome any suggestions for alternative ointments or information about any studies on the long-term effect of Muro.
Daily routine for me is Muro 128 during night, eyelid cleaning with Ocusoft in the morning upon waking up and in the evening.
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