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  • #46
    Originally posted by Mcgoldilocks View Post
    So, here's what happens to me...

    Every few months I wake up in the morning and immediately upon opening my eyes, one is bright red and sore and the pain is immediate and severe, so bad that I can't move my eyes at all until it's better, which will take most of the day. So for most of the day I have to sit completely still and not open either eye. If I open the good eye, it tries to focus on something which moves the other one, so I keep them both shut. I try not to breathe to heavily and I can't let my mind wander just in case my eye moves. The best position to lie is face down so the weight of my eyelid doesn't press down on my eye.

    Before Christmas I had to take a week off work as I woke up and the pain didn't stop all day. My boyfriend persuaded me to see someone, so I went to the hospital and the ophthamologist said my cornea was sitting like a blister on my eye, so she scraped my cornea off and gave me an eye patch for a week and told me to use lacri-lube for the next three months in the hope that it would heal properly (but with no guarantees that it would).

    I've been using lacri-lube religiously every night in both eyes but guess what? Last week I woke up and it had happened again in the other eye.

    I'm scared to go to sleep! After a bad episode I'm scared to go outside! Why won't any of the doctors/opticians I've seen tell me straight what's going on and give me proper advice?

    I'm now taping my eyes at night as well as using a hot cloth for 10 minutes and carrying on with the lacri-lube, but I've made another appointment with the doctor and this time I will go in armed with more knowledge. I've also made an appointment at a private clinic which will cost 275 but it is well worth it, I can't carry on like this!
    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.

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    • #47
      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

      Comment


      • #48
        My solution

        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!!

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        • #49
          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

          Comment


          • #50
            Recurrent corneal erosion tretment study

            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

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            • #51
              How I got my RCE under control -

              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.

              Comment


              • #52
                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.

                Comment


                • #53
                  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!

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                  • #54
                    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!

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                    • #55
                      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.

                      Comment


                      • #56
                        Originally posted by rce_in_nyc View Post
                        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.
                        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.

                        Comment


                        • #57
                          Mine has really improved

                          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.
                          Originally posted by Mcgoldilocks View Post
                          So, here's what happens to me...

                          Every few months I wake up in the morning and immediately upon opening my eyes, one is bright red and sore and the pain is immediate and severe, so bad that I can't move my eyes at all until it's better, which will take most of the day. So for most of the day I have to sit completely still and not open either eye. If I open the good eye, it tries to focus on something which moves the other one, so I keep them both shut. I try not to breathe to heavily and I can't let my mind wander just in case my eye moves. The best position to lie is face down so the weight of my eyelid doesn't press down on my eye.

                          Before Christmas I had to take a week off work as I woke up and the pain didn't stop all day. My boyfriend persuaded me to see someone, so I went to the hospital and the ophthamologist said my cornea was sitting like a blister on my eye, so she scraped my cornea off and gave me an eye patch for a week and told me to use lacri-lube for the next three months in the hope that it would heal properly (but with no guarantees that it would).

                          I've been using lacri-lube religiously every night in both eyes but guess what? Last week I woke up and it had happened again in the other eye.

                          I'm scared to go to sleep! After a bad episode I'm scared to go outside! Why won't any of the doctors/opticians I've seen tell me straight what's going on and give me proper advice?

                          I'm now taping my eyes at night as well as using a hot cloth for 10 minutes and carrying on with the lacri-lube, but I've made another appointment with the doctor and this time I will go in armed with more knowledge. I've also made an appointment at a private clinic which will cost 275 but it is well worth it, I can't carry on like this!
                          Last edited by Jay Hewitt; 10-Oct-2012, 15:09.

                          Comment


                          • #58
                            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.

                            Comment


                            • #59
                              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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