How to stop recurrent corneal erosions

[Jackson]

Hi all,

I'm hoping somebody could give me some advice, I've trawled the Internet to no avail and I'm not getting any help from my doctor. Basically I have recurrent corneal erosion in my right eye- I've had this for about a year since I cut it but was oy diagnosed with it about 6 months ago. Since the diagnosis I've been using lacri lube every single night and eye drops in the day. I still got infections about every 8 weeks or so and they lasted for about 2-3 days. Recently however I've been getting these infections more frequently and they are lasting longer. I havent had one now for 3 weeks and feeling pretty lucky- the last 2 occurrences were just 2 weeks apart and lasted for a week each. About a week ago i was feeling the familiar symptons before my Eye inflames and since i hve been using lacri lube all day long and the symptons have subsided. I've been feeling my eye getting gradually worse and I can't seem to find any advice on how to stop these infections occurring, also I dont know if me using this lacri lube all te time is safe- all I know is that my doctor can't seem to get my specialist to see me and he recently wrote to me just telling me to use lacri lube ( which I'd already been doing). Until he sees me and I don't know when that will be I'm just sitting around waiting for another attack so I'd be very grateful if anyone knew of what I can be doing to stop these? Or types of lubricant I can use? The attacks I get are excruciating and this condition ha gotten to a point where it's taking over my life- the length or time I'm Ill with it is ridiculous and the rest of my healthy time is consumed with trying to delay another attack. Any advice at all about how to handle this would be so appreciated. Thanks.

[jmchugh]

Hi there- I am going through the exact same thing. I have been having recurrent corneal erosions for the last 6 months. Today I celebrated going 9 days without one! For the last 6 months I have gotten them several times a week and it has taken over my life too. I am lost and don't know what to do and the doctors ( I have seen 4 specialists) really don't help much. I am using oasis tears plus every hour 24-7. This is helping a lot but now I am sick as I don't sleep through the night anymore. But I have no choice, my erosions always occur at night so I have to make sure that my eyes are moist at night. I do use a humidifier, do a warm compress and wash my eyes with baby shampoo before going to bed along with restatis and a genteal, a thick lubricant. I am getting tear plugs put in and hope that helps make my eye more moist. I also have in bandage contacts which have given me some relief. I have also been working with a holistic doctor who has encouraged me to change my diet. I am now not eating anything acidic.. no red meat, sugar, coffee, alcohol, gluten, wheat, nuts and dairy. I am also taking artic cod liver pills. Since I started this, I have not had an issue.. but I would love some more suggestions as well on other methods I can try. I have been so depressed lately because this is consuming my life.. i am hopeful that the plugs can help along with everything else I am doing. Can anyone give me advice?? Thanks- Jen

[Rebecca Petris]

Jackson,

A product available in the UK that could help (over time, and alongside other steps to take) is Clinitas Ultra 3 used at least 3-4 times a day. Those infections sound really worrying though - do you really mean infections not just new abrasions/erosions? You really need to get with a very good corneal specialist consultant, I would be insisting on a referral due to the seriousness and persistence of what's going on. We have a member named littlemermaid who is a real expert on accessing good resources for eyecare in the UK so you may want to try to contact her. (LM I hope you don't mind me shamelessly volunteering you in this way ). Some of the things I would normally suggest with RCE such as Tranquileyes goggles or other night eyewear to keep the lids immobile may not be suitable or safe enough if you're getting infections. But for short term while you're trying to get some better medical care what about taping the lids shut at night (not fun but it usually works pretty well).

Sleep deprivation is a huge problem for people with RCEs and at some point it needs to be the top priority to deal with even if it means medication.

jmchugh, very sorry to hear what you're going through. That frequency is very worrying. Have your doctors recommended PTK or scraping? Not saying I'm recommending it but just curious. In some cases it really does help. - Couple of other specific thoughts. Ditch the baby shampoo, if you're going to use anything use something much more mild that won't disrupt the tear film. Ocusoft foam (avail at most drugstores) is very gentle. If not using bandage lenses every night at least use eyewear or other strategies to keep the lids immobile at night - can be very important because involuntary eyelid movements during REM sleep or on waking can cause erosions. FreshKote is a really good option but it takes time (think months) and faithful preventive care.

It's interesting, I've recently had a significant influx of phone calls from folks with really stubborn RCEs who are utilizing everything including scraping and bandage lenses. So very timely topic for discussion. Some of you RCE veterans who have everything under good control might want to post links to threads or blogs where you have discussed/described your most successful strategies.

I spoke recently with a gentleman who had severe RCE in one eye and underwent PTK to clear it up. Unfortunately got talked into doing a combo PTK-PRK for vision and... you guessed it, he now has RCE in both eyes. Sigh. If only there were a one size fits all solution to this scourge.

[nors]

Sorry to hear your suffering so much. I have had corneal erosions and ulcers in the past. Reading your post it feels as if though you really should be examined by an opthalmologist. If your specialist is not willing to see you (but he/she should based on your GPs recommendation), then find your nearest eye accident and emergency department and go there. This way you will get seen by an experienced doctor who will make sure nothing more sinister is going on this time around and will be able to advise you on the heavy use of lacrilube and hopefully suggest appropriate treatment. Good luck.

[littlemermaid]

Hi Jackson,

You are entitled to access surface disease specialists in your PCT or, in theory, anywhere in UK. Unfortunately, if the GP or even an ophth can't diagnose or triage effectively we are temporarily snookered, esp if the GP has already referred to a non-starter ophth. What is this lacrilube without examination business, untreated infection, massive wait on referral, untreated eye surface damage - they are not looking after you to NHS standards, erosions are acute same-day referral and managed in secondary referral. http://www.cks.nhs.uk/dry_eye_syndro...wers/referral#

Some regions have independent triage services http://www.thepracticeplc.com/jsp/index.jsp?mnk=510

High street optometrists refer with better knowledge of disease than GPs, although again, you are looking for someone capable. They are interested in the reputations of the regional ophth and their areas of expertise, whether the clinics are overloaded and coping or not, to get their patients seen. I wouldn't rely just on an optometrist for treatment though. We've found we need an experienced ophth for diagnosis because the signs of even serious inflammation have been non-obvious things the optom haven't recognised and they can't prescribe.

As Nors says, we've got fast access to follow-up in the cornea clinics through a regional eye clinic A&E by turning up with nasty flareups looking at worst (phone triage nurse first).

As Jmchugh, punctal plugs and cyclosporine and short courses of low-dose oral antibiotics are widely used here now as first-line treatment, plus we have access to debridement and bandage contact lenses in the specialist centres.

Local docs have to work out the 'care pathways' and how to get their patients seen. But we can turn this into an advantage if we can find out who is the best ophth to see, and just advise a friendly GP where to refer http://www.dryeyezone.com/talk/showt...octor-who-will If the NHS isn't working for you fast enough, you can get advice from the specialists in private practice. We like to do this when things aren't going well, but can't afford it full-time.

For info, in early stage deterioration, on infected lid margins and resulting erosions and inflammation, we are currently using: antibacterial (preservative free chloramphenicol to fix infection and also in chronic use min 2/wk) + FML (until inflammation is controlled, then taper to min 2/wk, then, ideally, cyclosporine) + lubricant of choice. Also we aim to prevent reinfection with: warm compress + careful warm water cotton wool cleaning to keep the MGs moving + 1000mg/day flaxseed oil to change the meibom consistency (plus healthy diet, less clogging fats). Also protecting the eye surface with eg humidifier, wraparounds. You are looking at addressing each factor to get a 'spiral of improvement'.

Do you know why you are getting re-infection? Is it chalazion or red eye? What does it look like? This needs urgent attention to avoid the eye surface damage.

Here's the DEWS Report, the current treatment bible http://www.tearfilm.org/dewsreport/p...DEWS-noAds.pdf

I'm no expert but if you want to PM me with your location I can try to help you look online. Or if you post up your location, someone here might have local experience with the NHS service and recommend a good ophth.

This is awful, that you haven't got treatment for the uncontrolled reinfection, and inflammation, and help with managing the condition, and this should not be happening. You have no medical attention, it is urgent. Sounds like the GP is well out of his/her depth, so options could be:

- see another GP who knows more about eyes for more effective referral
- see a good optometrist for advice
- present at an eye clinic A&E while looking awful
- pay a dry eye/surface disease/cornea specialist in private practice for assessment and advice
- contact regional NHS specialist for advice on referral pathways with summary history (diplomatic skills required)
- ask Primary Care Trust what their pathways are, if it's not online

The aim is to find a cornea specialist you like to take you on NHS with regular follow-up. Until someone publishes an online Which? guide to ophthalmologists and services, the 'care pathways', and who's available in clinic when, are not clear even to primary care docs and optometrists, and change all the time. Which is liberating, but is, of course, survival of the fittest. Hospital websites and http://www.drfosterhealth.co.uk/ are the best we've got. Just to get perspective, remember how people used to die on waiting lists for cancer treatment, but now with targets for fast-tracking they are speeded through the system. Also, in hospital documentaries we see how people re-present until finally a doctor recognises what they have, that there are problems with sharing notes, or we are misdiagnosed. Make your own notes and request copies of letters and scans. So it's not a good idea to assume that they know what they're doing, esp your GP. It's still mostly an underfunded uncoordinated mess in ophthalmology so we have to pick our way through what's available, and the experience can be very random, plus we have every sympathy and gratitude for anyone who's trying to do a good job in that 'management' environment. I'm hoping you will find this empowering in your pursuit of good treatment!

Can anyone think of anything else that would get Jackson fast ophthalmology attention and good follow-up?

It's a referral problem, and you might have to resign yourself to travelling a bit further from home to get good attention and advice in a big teaching hospital, if there's no local expertise. This is NHS policy now, 'specialist centres' with minimum duplication. All confusing for the docs and us. Unfortunately this can mean trailing round until we access treatment, which doesn't seem to happen so much in other specialisms. It is astonishing that the service is not coordinated. Even within a good clinic, it depends who you get that day. This is why I like private practice occasionally for advice. But hopefully you can settle down with a good cornea consultant ongoing in the NHS.

Hoping to hear how you're getting on.

[liz56]

Hi, Jackson and Jmchugh.

I'm sorry that this painful condition brought you here to the DEZ. It's what brought me here, too. Rebecca's advice is terrific. She's helped me a great deal. My bout with RCEs lasted from mid-2007 through the next nine months. They finally resolved in March 2008. However, I still do maintenance to my eyes to keep them stable, like use Tranquileyes goggles and Muro 128 5% four times each day. So many factors can cause them. Mine were a confluence of an old injury, going through anemia, lagophthalmos, and having a thyroid that was out of control. So, pay attention to your whole being, because the eyes may be telling you about something else.

I also went through several doctors before I found one who could help me. I had to travel out of state, and use Restasis and Dextran 10%, which had to be refrigerated. It was also frustrating, because I kept trying to keep routines and guessing about what was working, and I'd go a couple of weeks and think that I was finally healing and be hit again.

So, when it was all over, I retraced my year to go through it, partially for me to consider what might have worked, but also because there were some people with questions about what I had done.

Here's the product of that year: http://www.dryeyezone.com/talk/entry...al-Erosion-Log.

There are lots of pretty sophisticated things that you can do, like debridement, steroids, bandage contact lenses, and stromal puncture, as you may have been told. I never went for any of that, because I felt like my problem was not addressed by those, and it did turn out to be an underlying problem for me. As soon as I was put on thyroid medication and got goggles to keep my eyes shut when I sleep, things improved rapidly.

I wish you the best.

--Liz

[jmchugh]

Thank you so much for your advice. Rebecca i am going to discontinue the use of my baby shampoo right away.. it always irritates my eyes but for the last 5 years my doctor has told me to use it. I also just ordered your rice bag and tranquileye goggles.. hopefully these items help. Liz- I am going to make an appointment with my internist to see if there is anything else going on. Thanks for your help! Jen

[Sarco]

Hi Jen, I am from St. Louis, MO too. I have recurrent corneal erosions that are destroying my life. I've seen two conventional ofthalmologists over the last 3 years with no improvement, they just put me on genteal or muro 128 and some doxicycline but the problem keeps happening and it is becoming more frequent. I would like to try your holistic doctor and take a diet change approach to this problem. I don't care how much I have to sacrifice the foods I like...I just need this to stop no matter what. Since you mention that you haven't had any more problems after following his/her dietary guidelines plus the cod liver pills I am eager to get an appointment myself and try and see if this works for me too. Could you let me know me know who your doctor is? I would really really appreciate it. I am desperate. Thanks, Sarco.

[eyemech]

I have been treating RCE for many many years. I have seldom had any luck with muro etc. Everyone talks about RCE and bandage contact lenses. What I am not sure they discuss is just how long they have to wear them. I have patients who have been in them for years! Just in case any of you are wondering, I sometimes have my patients wear two different pair of lenses. One by day and one by night. None of us really knows how quickly the RCE actually heals. It could easily take months and some of you probably wear the lenses only for weeks. One side note. You should probably be treating your dry eye in addition. Lets face it, anyone with RCE probably has dry eye. As a doctor who looks at these all day long, I have noticed that the RCE is just under the upper lid. My thoughts are that this is where the lid goes up and down over a dry cornea causing a subclinical abrasion.
In the morning, the lid sticks to the cornea creating the pain. That cannot happen if you continue to wear a bandage lens of some sort for months or even years. I wish I had a crystal ball to tell you when it clears.

[janie]

My life saver re corneal erosions....

Dear Jackson,
Reading your entry inspired me to join this forum today. I would like to share with you a life saving moment with an opthamologist at the Mayo Clinic. After suffering terribly from excruciating nightly corneal erosions starting in about 1989 (diagnosis was MAP DOT SYNDROME of otherwise known as FINGERPRINT CORNEAL DYSTROPHY or BASEMENT MEMBRANE DYSTROPHY) and after having 2 corneal scrapings and numerous emergency visits with eye docs trying everything, I decided to go to the Mayo Clinic. I was expecting more surgery, etc. But, much to my surprise, the doctor simply asked me whether I had ever tried Muro 128 5% ointment and Muro 128 5% opthalmic solution. I had not tried these, and to me it seemed odd to use products with sodium in them for dry eye. However, it was a LIFESAVER!!!! From that day on, every night I have applied Muro 128 5% ointment to both eyes (I have the issue in both eyes.) A tip: try to keep your eyes closed after applying the ointment to make it most effective. Evidently the sodium in the ointment takes down the edema, and the ointment is a miracle. I tried one night without it and will never do that again!!! The Muro 128 5% Opthalmic Solution is used as needed if I start feeling problems. Also, I use Refresh Classic Artificial Tears when needed. They are preservative free and are mild. So, that is my routine. For over 20 years, my situation, which is genetic and will not disappear, is under control with almost no corneal ersosions. I don't know if your erosions are caused by the same situation as mine, so of course you will need to weigh that. But, I wanted to write to you with what has helped me. Let me know how you are doing. I know what you are going through, and the pain is debilitating. Hope you get this note. Take good care, Janie P. S. I also tried Lacri Lube when I was experimenting with all tears and ointments prior to the Mayo visit, and it did not help at all with my corneal erosions.

Hi all,

I'm hoping somebody could give me some advice, I've trawled the Internet to no avail and I'm not getting any help from my doctor. Basically I have recurrent corneal erosion in my right eye- I've had this for about a year since I cut it but was oy diagnosed with it about 6 months ago. Since the diagnosis I've been using lacri lube every single night and eye drops in the day. I still got infections about every 8 weeks or so and they lasted for about 2-3 days. Recently however I've been getting these infections more frequently and they are lasting longer. I havent had one now for 3 weeks and feeling pretty lucky- the last 2 occurrences were just 2 weeks apart and lasted for a week each. About a week ago i was feeling the familiar symptons before my Eye inflames and since i hve been using lacri lube all day long and the symptons have subsided. I've been feeling my eye getting gradually worse and I can't seem to find any advice on how to stop these infections occurring, also I dont know if me using this lacri lube all te time is safe- all I know is that my doctor can't seem to get my specialist to see me and he recently wrote to me just telling me to use lacri lube ( which I'd already been doing). Until he sees me and I don't know when that will be I'm just sitting around waiting for another attack so I'd be very grateful if anyone knew of what I can be doing to stop these? Or types of lubricant I can use? The attacks I get are excruciating and this condition ha gotten to a point where it's taking over my life- the length or time I'm Ill with it is ridiculous and the rest of my healthy time is consumed with trying to delay another attack. Any advice at all about how to handle this would be so appreciated. Thanks.

[MEMPHISBRIDGE]

Anyone tried oral doxcycline starting after you're last erosion?

[Rowanberry]

I have been getting RCEs for years but they are much better controlled since I saw my NHS consultant.

I have a tear film that breaks up very quickly especially at night so my eyelids stick to my corneas and cause erosions when I go into REM or wake up. (If you have a different cause this treatment may not be enough for you.) I was getting two or three a night before I was treated but I do not get infections.

Surprisingly he said to use celluvisc during the DAY and, surprisingly, that alone helped a bit. Punctal plugs, though, were painful and had to be removed.

I now use celluvisc every hour or so during the day, more as it gets near bedtime. I do a heat treatment with tranquileyes and celluvisc before bed as it seems to hydrate my eyes nicely. I then use a line of lacrliube then a squeeze of viscotears into the corner of my eyes, neither doing any good on their own. I wear tranquileyes all night but I have to replace the lacrilube and viscotears combo two or three times during the night.

When I wake up, I gently move my eyelids so they are not stuck down.

This regime has made a great difference to me, I have gone weeks without an erosion but they are not gone completely and there is no pattern to when they recur.

I noticed that getting anything in my eyes would cause an erosion that night so I wear padded biker glasses outside and clear ones indoors if I am doing anything that could be dusty.

In the morning, I wipe down my eye margins with a hypoallergenic eye makeup remover pad using a different part for top and bottom of each eye.

I hope you find something to help

R

[agoffin]

Hello

I tried Hyperbaric Oxygen Therapy and it WORKED. Here is my story: https://sites.google.com/site/corneahbot/

I would suggest to contact a HBOT center and see if you have no contra-indications to follow such a treatment. It sure has been life-changing for me (I did all my sessions in March of 2012 and so far so good).

Best of luck

[farmgirl]

Well done documentation, good info. I don't have this problem (yet) but if I ever do HBO will be the first thing I try. Thanks for sharing.

[emeraldile]

Dear Janie,

I have been reading everything I can find once I was correctly diagnosed with map dot fingerprint dystrophy. I especially appreciate your post. What you have shared was just the right advice for me. I had tried everything. Once I finally got a good diagnosis (like most people it took four specialists to get to one that was right), I could start to heal. Two days ago after reading your post I bought myself a tube of muro 128 ointment and I use the Systane Ultra preservative free drops. I went to using the little Onyix goggles (but keep two sets of Tranquileyes close by just in case). Now when I go to bed, I use the Muro ointment, I set my alarm for every 1.5 hours. At those times I apply a couple of drops of the Systane Ultra and in the morning, I'm fine! It's nothing short of miraculous. Thank you for your post. It really helped. -Janet