Recurrent Corneal Erosion - advice please?

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So a few months ago I started getting watery eyes, usually the left but occasionally the right too, along with soreness (limited by the hefty amount of pain meds I am already on, but still enough to cause me enough discomfort that I can't open my eye when it tears right up), massive watering (i'd look like my whole side of my face was red and swollen like after a massive crying fit), halos around lights, photosensitivity, a sensation of grit but not dryness, and it came and went in waves - worse first thing in the morning and sometimes it was OK for a few days and other times it happened every hour, maybe lasting a minute or two or for hours at a time with my eye spasmed shut. My GP was clueless and sent me to my optician, said it was probably faster than waiting to see the hospital because my eyes ached and with the blurring he was concerned about glaucoma as there were no obvious signs of infection or injury.

My optician fitted me in within the hour and had to numb my eyes enough to do the pressure, check the retina and use the slit lamp to examine my corneas. He had to use local anaesthetic because by that point I could barely open my eyes, and couldn't tolerate the light from the lamp - even the fluorescent strip lights hurt. Daylight was worse. A quick drop of dye and a blue lamp showed that I have corneal erosions - a big wide band right across my pupil on the left and a smaller one on the right. I have no idea what triggered it - nothing stands out, it just started out of the blue one day. 

He suggested I get a prescription for eyedrops - suggested some which my GP was kind enough to write a prescription for when I popped back to the surgery afterwards, even though I didn't have another appointment. One was Clinitas carbomer 0.2% gel and the other one was Lacri-Lube which basically feels like vaseline in my eyeball. I actually found the Lacri-Lube more irritating and unusable, it left my vision unbearably blurred for several hours too. The Clinitas is better and has reduced my discomfort - I'll even go several days sometimes without any symptoms. But it never lasts, even though I keep using them, it just comes and goes, and it's not actually seeming to fix the underlying issue.

I've been using them for 6 weeks now and I would appreciate more advice - should I be asking for a hospital referral as it doesn't appear to be resolving quickly? And what other self help things can I do? What would the next step be - a bandage lens? Or steroids and a tetracycline? Would an external eyepatch help? I don't particularly want to resort to surgical/needle related treatments if I can avoid them.

I use tinted lenses now to minimise glare and bright light, and I slowly open my eyes in the mornings,  I try to avoid rubbing or touching my eyes, and stay away from fumes or smoke I try not to sleep long stretches which is hard with other illnesses I have but I try and reapply drops after a few hours when I wake through the time I'm sleeping. But I'm really frustrated by this, it's sore and achy and makes everything different when I can't open my eye to see and even when I do, it's blurry and haloed and painful. I can't even have a decent cry over it, as crying just makes it worse too! sad

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12 Replies

  • Posted

    I feel so sorry for you. Eye problems are so frustrating. I'm not sure regarding the treatment, but I would definately suggest that you ask for a referral to either your nearest eye hospital or opthamology department in local hospital. I have dry eyes and blepharitis amongst other things, which causes similar symptoms. I don't know if it's related or not. I wear sunglasses almost everywhere I go and use eye drops several times daily. Take care x

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    • Posted

      Thanks for that, I appreciate it. It isn't quite the same, no, though dry eyes causing irritation could lead to a corneal abrasion and that could lead onto an erosion, but yeah, many of the symptoms are the same. I will chase up my GP and see what they say. I just had a good couple of days and today I wake up and find it's back to being sore and watery again. UGH. so frustrating!

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  • Posted

    What a time you are having & I too feel sorry for you & can sympathise with you.

    Are you near to a hospital with an eye department?  Your Optician can send you to the emergency clinic at your local hospital, as can your GP.

    https://patient.info/health/blepharitis-leaflet

    Have you read this leaflet?  It is very helpful.

    You might find that warm compresses on your eyes may melt the secretions that are blocking your Meibomian glands, which in turn, stop your eyes from being lubricated.

    Your GP has given you some lubricants.  You ought to try the Lacrlube at night, when you are about to go to sleep, then it doesn't matter if your eyes are blurred.

    I was prescribed Hyabak which are preservative free lubricating drops & it doesn't matter how often you use them.

    I do think you need to move on from an Optometrist, to an Ophthalmologist, who is medically trained and works in a hospital.

    If you get nowhere with your GP or Optometrist, then I think I would go to A&E in a hospital where I know they have an Ophthalmology department.  You might have a wait but ought to be seen by an Ophthalmologist.

    Good luck.

     

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    • Posted

      Thanks for your advice. Corneal erosion isn't quite the same thing as blepharitis, but I have read that, and the article on recurrent corneal erosion syndrome too (https://patient.info/doctor/recurrent-corneal-erosion-syndrome) - which is... disheartening but not unsurprising. 

      I did try the lacrilube at night for a while but found that, oddly enough, it seemed to irritate my eyes more. Had it just been the blurring - which, honestly, was bad enough that I couldn't even make out shapes - I would have tolerated that for a working solution, at least at night, but it didn't seem to help any - I'm not sure if that's because of the fact that it's oil based, or because of some other additive irritating my eyes but yeah, unfortunately it didn't work for me. I will definitely ask about Hyabak though.

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    • Posted

      I was prescribed VitA-POS eye gel instead of Lacrilube 2 or 3 years ago.  I don't have blurring problems but I didn't find it helped, though, having said that, sometimes it does.  Vitamin A aids healing.

      You also have to remember that Optometrists are not medically trained & I wonder why you haven't been referred to an Ophthalmologist.

      Google your local hospitals & see whether they have an eye department.

       

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    • Posted

      Simply because that's what the NHS is like right? My GP sent me because he was concerned about the pressure in my eyes - that I might have glaucoma - and it was far quicker to get that tested, as well as visualise the retina etc by an optician than wait for an emergency appointment at the hospital. And honestly, the prescription I've been given is (as far as I can tell) correct treatment from corneal erosion. You're right that they're not a medical doctor, but they are going to see common eye complaints regularly. I imagine he wanted to see if basic lubricating eyedrops would resolve things before writing a referral - that's how it all works these days, unfortunately. rolleyes 

      That said, I will be asking for a referral, as I said below, because it's not one that's going away with basic treatment unfortunately, and because I want to be sure there's no underlying issue causing the erosions.  I am lucky to have a decent hospital literally five minutes away from me, so hopefully that will be where I go. I'm also within driving distance of a big eye hospital too, so if necessary, I can also go there. I'd prefer locally though - my other health issues make it' extraordinarily difficult to leave my bed, let alone the house.  Thanks for your reply.

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  • Posted

    Your symptoms are almost identical to what mine were when I first went to my opthamologist and was diagnosed with Fuchs Dystrophy. When I read how yours progressed it's almost exactly what I experienced. You need to see an opthamologist as an optician would not be knowledgeable enough or be able to do an in-depth enough examination to determine this diagnosis as far as I know. Interestingly, a few months later I stopped taking NSAIDs and anti-anxiety medication and my eye symptoms cleared up significantly. Subsequently I discovered many common medications can really really mess with your eyes especially if you have this condition. You should see the opthamologist soon as Fuchs Dystrophy can progressively lead to permanent vision loss.

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    • Posted

      Eek, ok, good to know. I'll be sure to push my GP into getting me referred. Thankfully I have a decent hospital just a few minutes away from me, so hopefully they'll have a decent opthalmologist who can make double sure it's actually RCES not something worse.  

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  • Posted

    I know I’m really late, but I also have recurrent corneal erosion. I definitely feel your pain, literally. I started having these issues about 3 years ago and dealt with it for several months before finally having an episode so bad that I couldn’t take it anymore and went to the eye doctor. I thought it was allergies, I’d never had allergies that affected my eyes before, but the pollen in our area was exceptionally bad that year and everyone’s allergies were worse than usual, so I figured that explained it. The only thing that kinda threw me off is that every now and then when I’d wake up, I’d open my eyes and it would feel like someone stabbed me in my right eye. I’d instinctively press my hand against it and honestly expected to find my hand full of blood, but of course it wasn’t. Sometimes the pain and extremely watery eyes only lasted a few minutes and I’d be fine by the time I needed to leave for class (I was in college when this started.) Other days my eye would be extremely irritated, watery, and so sensitive to light that I couldn’t even look at my phone at the dimmest setting without my eye burning, for several days at a time. Then I’d have no issues for a couple weeks, but it’d always start up again. It always seemed to have the worst timing, midterms and final’s week were the two worst instances, and it was after my last final that I finally went to the doctor and found out that it was actually a recurrent corneal erosion, not allergies like I thought. How he described it to me was that when we sleep, our corneas naturally swell and most times that’s not a problem, but the corneal erosion is basically a dry spot(s) on your cornea and can get stuck to the inside of your eyelid when you sleep. Then when you open your eyes in the morning, it rips that stuck part and causes the pain and irritation. He initially gave me antibiotics and had me come back a couple times to make sure it wasn’t infected, then gave me the name of an over the counter eye drop that helps keep your eyes from swelling. It may just be a different version of the drops/ointment you mentioned, but it’s called MURO 128 (also called Sodium Chloride Ophthalmic Solution, it’s available in an ointment too, but I found the drops to be much easier to use.) I still have some minor occurrences, but nowhere near as bad as before I was using the drops, and typically if I do wake up with it, I can put another drop in and it’s fine after a few minutes. Something I did back before I actually knew what the issue was, was I’d set a second alarm for 5-10 minutes before my actual alarm, so if I woke up with one of those minor ones that only lasts a few minutes, I could lay back down and close my eyes and let it pass. It seemed to ease off faster if I could relax like that for a bit instead of having to jump right out of bed and start getting ready for class. Hope maybe some of that was helpful. It’s definitely not a fun thing to deal with.
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  • Posted

    Very late to this post but I’ve been searching online for info about recurrent corneal erosions. I have had this for over two years now and it’s been a challenge. I am booked next week for a corneal scrape and diamond burr, just wondering if anyone has had this or any experience with this. They don’t give a lot of info when booking for the procedure. 
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  • Posted

    I had RCE for 2.5 years.  Went to corneal specialist, opthamologists, etc... besides getting prescribed Xiidra, buying an assortment of eye gel drops, lubricants, etc... they still persisted, about once a month. 

    I finally, earlier this year, ran across a white paper online about an infant with a corneal abrasion that wouldn't heal.  Turns out the infant was zinc deficient.  Once zinc levels were fixed, the abrasion healed. 

    I got my zinc checked, and I'm deficient!  I started taking chelated zinc, 30mg once a day and haven't had a single erosion in 6 months!!  I did, however, at once point, have a severe eye twitch problem for weeks, and read that can be a sign of too many minerals, so I backed off the zinc to a couple times a week and still- no erosions!  Turns out there are zinc deposits in the eye, and zinc is a necessary mineral to make the eyes function properly, so please, please, request your PCP check your essential minerals (calcium, zinc, etc..) because those could be underlying issues with eye health. 

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  • Posted

    I had RCE for 2.5 years.  Went to corneal specialist, opthamologists, etc... besides getting prescribed Xiidra, buying an assortment of eye gel drops, lubricants, etc... they still persisted, about once a month. 

    I finally, earlier this year, ran across a white paper online about an infant with a corneal abrasion that wouldn't heal.  Turns out the infant was zinc deficient.  Once zinc levels were fixed, the abrasion healed. 

    I got my zinc checked, and I'm deficient!  I started taking chelated zinc, 30mg once a day and haven't had a single erosion in 6 months!!  I did, however, at once point, have a severe eye twitch problem for weeks, and read that can be a sign of too many minerals, so I backed off the zinc to a couple times a week and still- no erosions!  Turns out there are zinc deposits in the eye, and zinc is a necessary mineral to make the eyes function properly, so please, please, request your PCP check your essential minerals (calcium, zinc, etc..) because those could be underlying issues with eye health. 

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