Hey guys, Just got diagnosed with RCE about 4 months ago!

[Mike2000z28]

I was searching on the internet because i have never heard of this before and came across this great site. Basically about 4 1/2 months ago during the day i noticed my vision was blurred but didn't know why. Anyway i chalked it up to nothing till i started waking up in pain like someone stabbed me in the eye and finally went to the doc. After researching my pain and symptoms i told him i think i have RCE, and he examined me and laughed and said its funny you diagnosed yourself!. Anyway he put me on muro128 and genteal drops. I was using this combo for the last 3 months with no affect really. I would still get erosions, sometimes bad even with the drops and cream. Then one night almost 2 weeks ago i discontinued the cream and just started using the drops exclusively during the day and right before bed and haven't had an episode since. The cream is a pain to put in and it would cause to much crust in my eye.

My Doctor just sent me to a second doctor for a second opinion since it isn't healing and that doctor was a complete ass ignoring what i was saying etc. I told him the cream isn't working and for me it seems to make the problem worse, but he didn't care and prescribed me another cream and systain ultra drops. I haven't filled the prescription yet, but what are you thoughts about the cream? Anyone have any luck?

Thanks
Mike

[liz56]

Hi, Mike.

It's great that you were able to diagnose yourself. Doctors have a really hard time figuring this one out. You'll probably find that your own research and talking with other people with the problem will help more than most doctors can.

This condition can take over your life, so I am glad to see you here, because this is a great place to get support and to find understanding for our varied and unique conditions. Often, people without painful eye problems do not understand what we endure.

I had the same problem with Muro 128 5% ointment. It helped for the first two weeks but quite helping. A new combination of Muro 128 5% drops all day and Genteal Gel at night helped me, too. Once the Dry Eye Shop restocks Dwelle, you might want to give it a try. It does not have as powerful a pull to draw the moisture out of the basement membrane as Muro 128 5% does, but it feels better in the eye and is more pleasant to use with Genteal Gel at night. It has helped to stabilize my condition, as has a pair of Tranquileyes goggles for sleeping (used dry), and a hot shower before bedtime.

This condition has completely altered my life, but I am happy to note that my eyes are doing much, much better, and I am managing the condition.

Take care,
Liz

[calcan]

Hi, Mike.

It's great that you were able to diagnose yourself. Doctors have a really hard time figuring this one out. You'll probably find that your own research and talking with other people with the problem will help more than most doctors can.

This condition can take over your life, so I am glad to see you here, because this is a great place to get support and to find understanding for our varied and unique conditions. Often, people without painful eye problems do not understand what we endure.

I had the same problem with Muro 128 5% ointment. It helped for the first two weeks but quite helping. A new combination of Muro 128 5% drops all day and Genteal Gel at night helped me, too. Once the Dry Eye Shop restocks Dwelle, you might want to give it a try. It does not have as powerful a pull to draw the moisture out of the basement membrane as Muro 128 5% does, but it feels better in the eye and is more pleasant to use with Genteal Gel at night. It has helped to stabilize my condition, as has a pair of Tranquileyes goggles for sleeping (used dry), and a hot shower before bedtime.

This condition has completely altered my life, but I am happy to note that my eyes are doing much, much better, and I am managing the condition.

Take care,
Liz

What is Muro 128 5% drops, and what eye conditions are they for?

[liz56]

What is Muro 128 5% drops, and what eye conditions are they for?

Muro 128 5% eye drops are a hypertonic eye drop. That means that the drop's molecules exert a certain mount of pressure on a membrane, in this case the epithelial membrane of the cornea. As a result, the drops "dry out" the basement membrane of the cornea, which helps to heal it, or "anchor" it to the epithelium. It is the moisture that gets between the basement membrane and the epithelial layer that causes RCE's.

Muro 128 5% used to be sold by prescription only, but now it is available OTC on the shelves in most pharmacies and grocery stores. It is expensive. I have seen it range from $19.95 to $26.00. It comes as a bottle of eye drops and as an ointment for nighttime use.

Dr. Holly has some words on it in his forum. I might help to run a search there for a better scientific explanation of how it works and how it is unlike and like Dwelle.

--Liz

[Mike2000z28]

Basically i just went to my second doctor and he prescribed me lacrilube and systaine ultra drops. Is the gel easier to administer? With the muro 128, i had to have my wife squirt it in because i couldn't do it without it getting everywhere but in my eye!!

I had an episode today because i was doing so well(2 weeks without an episode) that i forgot i had it and i opened my eyes right away without checking to see if it was stuck and bam. I was like crap there goes 2 weeks of getting better, back at square 1.

With everything that i have read, im still unsure how this happens. I mean i don't wear contacts, never scratched my eye. It feels like it just formed by itself. I asked the doctor if it could be dystrophy and he told me no because it would happen in both eyes. Also my my erosion is square in the center of my eye so i can't even read the top line of a eye test.

Im just frustrated as i just turned 30 and its true you do fall apart once you hit 30! hahaha.

[lisiamc]

Hi Mike

I'm sorry that this has been happening to you. RCEs are horrible things. I have had several in one eye, following an injury (actually that's such a dignified description - what happened was that I stuck the corner of a magazine in my eye.)

Lacrilube is one of my pet hates. My doctor tried to get me to use Lacrilube early on. I have rarely been so miserable! My eyes felt gritty, sticky and sore all day and all night. Evidently there have been studies done that show it's not very good for dry eyes, because it keeps moisture out, and it doesn't necessarily prevent more erosions, either. Kind of like putting vaseline on your skin and watching the water bead up and roll off. There are more knowledgeable posts with better info on these boards if you search for Lacrilube.

If/when you can get some Dwelle, it can be really helpful, as Liz says. I have used it, and its UK cousin, Clinitas Ultra 3 and it helps.

Good luck - I hope you find a treatment programme that works for you soon.

Lisa

[liz56]

Hi, Mike.

Lisa's got a great point about bland ointment as being a poor treatment for RCE's.

Your story, the fact that you have never had an injury and that the RCE's occurred spontaneously, plus the fact that your doctor vaguely mentioned a "dystrophy" all suggest that you might want to ask about anterior basement membrane dystrophy (aka "map-dot-fingerprint dystrophy," epithelial basement membrane dystrophy., and Cogan's dystrophy). It hits usually after the fourth decade of life but can happen much earlier. I have spoken with people who have had it in their teens. Also, most people who have it go their lives without ever knowing it. All they notice is some "dryness" or "tiredness" or a little bit of "astigmatism" that "comes and goes" but never have anything that rushes them into a doctor's office, like RCE's can do.

Here's a little information about the dystrophy:



Corneal Atlas: Part IV
How to Detect and Deal With Dystrophies and Degenerations

Corneal breakdown comes in many forms. Your diagnostic skill is key to managing
the problem effectively.

by Alan G. Kabat, O.D. and Joseph W. Sowka, O.D, Contributing Editors

Any number of predisposing factors can lead to a progressive degradation of the corneal tissue. Certain patterns of corneal breakdown are associated with well-documented systemic or ocular conditions. Others remain something of a mystery even to this day.

A patient suffering from vision loss and pain cares less about the cause than about your ability to diagnose the problem and ameliorate his symptoms. No doubt in any given year the typical optometric practice will encounter numerous incidents of corneal degenerations and dystrophies. Here's how you can recognize and manage these conditions.

[...]

Epithelial Basement Membrane Disease
There's some debate over whether epithelial basement membrane disease is a dystrophy or degeneration. It's similar to other dystrophies in many respects. It often has an autosomal dominant inheritance pattern, it's bilateral, it affects only one layer of the cornea, it's centrally located, and it's not a sequela of associated systemic or ocular diseases. Yet some consider EBMD a degeneration because it typically starts after age 30 and in some cases it occurs sporadically without a family history.26,27

Whatever you call it, we do know that EBMD represents a continuum of progressive epithelial basement membrane dysfunction. The progression may include Cogan's microcystic epithelial dystrophy, map-dot-fingerprint dystrophy, anterior basement membrane dystrophy, fingerprint dystrophy, and net- and bleb-like patterns.28

Patients with EBMD usually present without symptoms. Others report mild, transient corneal irritation on awakening, with photophobia or glare. About 10 percent develop transient blurred vision with painful recurrent epithelial erosions. Most patients have fluctuating visual acuity without discomfort. Look for these three signs under the slit lamp:

* Maps. The earliest clinical findings in EBMD, maps are sharply demarcated areas with hazy, white centers. Oval lacunae may appear within these areas. Sodium fluorescein will exhibit negative staining over the maps, particularly in elevated areas.
* Dots. These gray or white opacities appear within the epithelium. David G. Cogan, M.D., described these as microcysts in a condition later named for him. Dots often form within or adjacent to maps. These opacities show positive fluorescein staining when superficial.
* Fingerprints. These are concentric, usually curved parallel lines in the central or mid-peripheral cornea. They often surround the maps and are best seen in retroillumination. Groups of fingerprints are sometimes called "mare's tails."
* Blebs. Small uniform vacuoles that usually cluster in the central cornea, blebs may form refractile lines that follow the normal anterior corneal mosaic. These lines are known as nets.

In EBMD, the basal epithelial cells manufacture finger-like projections that protrude off the thickened basement membrane. These irregularities migrate forward, causing corneal surface abnormalities. The epithelial layer cannot regenerate basal lamina, and this results in poor epithelial adherence. This ultimately leads to recurrent corneal erosion, the most common reason patients seek care.

Patients who present without symptoms can simply be educated and monitored. Patients with mild irritation in the morning may require management with supportive therapies such as lubricating drops or ointments at bedtime and in the morning. Punctal occlusion may alleviate discomfort from dry eye. Some clinicians recommend hypertonic solutions and ointments for significant presentations. Yet studies have shown little difference between hypertonic preparations and bland ointments in managing EBMD.29 Soft contact lenses may help smooth surface disturbances in cases of significant visual acuity loss.

Patients with EBMD and a history of traumatic abrasions have the highest incidence of recurrent corneal erosion.30 Corneal erosion may require debridement of the loose epithelium, topical cycloplegia, topical antibiotics and hypertonic drops or ointment. Pain management may call for cold compresses, oral analgesics or topical NSAIDs. Recurrent corneal erosion that resists medical management may require surgical intervention such as anterior stromal puncture using a 25-gauge needle or Nd:YAG laser. Phototherapeutic keratectomy is an effective alternative in some cases.

Source: http://www.revoptom.com/archive/issue/ro111f4.htm

And another article:

http://www.revoptom.com/index.asp?page=2_13756.htm

I went to seven doctors before I had a complete diagnosis or a viable treatment plan. Two of those doctors were corneal specialists, and the first did not see that I had the dystrophy in the other eye, even though I told him I felt like I had an erosion in it that very morning and he looked again. That's how hard it is to find out exactly what is happening.

I wish you luck and success; you can get past this!

--Liz

[Mike2000z28]

Hey Liz, thanks for the info. I seem to think i have the map/dot disease for the simple fact is when he trys to draw what he sees, it resembles dots/ and like little jagged islands. Im going to my second eye specialist in 2 weeks and he is supposed to be good. I want to print this out, but i don't want him to get offended because i dislike doctors that think they know everything like the past specialist i just went to. He needs to nail down the type of RCE i have. I just read my referral letter from my eye doctor and he tells the Doctor im gonna see that my VA flucuates between 6/12 and 12/12 whatever that means. Maybe visual acuity?

My Vision is def worse the day of an erosion and then slowly gets better i guess as it tries to heal.

So i should goto the pharmacy and ask for Dwell? Is it OTC?

Sorry for the questions!

Mike

[liz56]

Hi, Mike.

I think that VA= Visual Acuity. It really does fluctuate for people with ABMD.

Did your doctor say where (as in on a clock face, like six o'clock position) the erosion occurs? My left eye gets them at nine o'clock and my right at six. They are typically in the bottom half of the eye, which is sometimes exposed in sleep. (I cannot prove it, but I think that my eyes don't close the whole way, and when I started using Tranquileyes goggles dry at night, my last four erosions were quite mild.)

Sometimes people do not get them over the pupil, leaving vision unaffected. For me, the left eye falls on the pupil to a great extent, and in the right eye just a little.

Dwelle is OTC, but it available only through the Dry Eye Shop, and they are out of stock for now.

To get a prescription for a drop that is made by another manufacturer but is exactly the same as Dwelle (but with a lipid added), you might want to ask for FreshKote (US) or Clinitas Ultra 3 (UK). Our friends in the UK tell us that Clinitas Ultra 3 is available OTC, though as FreshKote in the US, it is available oly through prescription in the US. FreshKote and Clinitas Ultra 3 are the same drop-- Dwelle with the added lipid. I know that this is confusing!

Let us know if you have more questions. This is the kind of condition that if you understand it, you can do a lot to help it.

--Liz

[Mike2000z28]

Hey Liz,

Basically my erosions are dead center in the middle of my eye so therefore my vision is blurry all the time, it just depends on how blurry. I woke up twice this morning with some intense pain and foreign body sensation and my eye is extremly sensitive to light right now. Odd part is though i feel like i can see a bit better, like its less blurry. In the meantime, ill ask the pharmacist for freshkote, but living in Canada, not sure if i can get it. I can always get it at my parents house when i go down to Philadelphia to visit.

Right now the foreign body sensation is a PITA. I have put some genteal drops in when i woke up and another an hour later. If i can't get the Freshkote, would the Genteal Gel be alright for nighttime and using the Genteal drops during the day workout? It seems from what your telling me and what i have been reading is that everyone is different and there really is not universal treatment which is frustrating for a patient since doctors like to think they know it all and to tell them otherwise is insulting to them.

[liz56]

Hi, Mike.

I'm sorry to hear about your recurrence today. I hope that you can find something that works for you.

Just to clarify, you will need a prescription for the FreshKote in the US. It is only under the name of Clinitas Ultra 3 (in the UK) that it is OTC.

In the meantime, you might want to go with Muro drops. They are OTC and available in most chains in the US. You might be able to find them in Canada. When I was prescriped Muro 128 5%, it was for every four hours. It is a good choice in the absence of Dwelle, if you are looking for something and not getting what you need from your doctor.

You're right that the cases are all very different, and different things work and don't for different people. For instance, a lot of people here have found help from the Muro 128 5% ointment, but I have not.

Genteal Gel is so nice, and when my erosions were really bad, I would set the alarm to sound every two hours and reapply it. I was going through a tube a week, but I went for six weeks without an erosion. I also began to extend the alarm by an hour, every few days, as the good nights increased in number.

I think that you might have it a little better than I did, because REM sleep would set off erosions for me, and I never got to make it through to the morning without them. So, you might be able to just set your alarm for every four hours.

It also might help to keep a little preservative-free (PF) vial next to your bed and apply it to closed eyes in the morning.

I wish you the best. I think you'll figure it out; you're talking with your doctors and asking the right questions.

--Liz

[Mike2000z28]

Quick question for you guys. I have seen some of you go without erosions for months. The doctor told me it takes 2 months for it to heal and i can't have any erosions in that time frame. Now hasn't your erosions healed since you have gone months without one? My vision flucuates between blurry and can't see crap out of my right eye to much better than next day. However it flucuates itself without any erosions or pain. Also one of my doctors said i don't have any dystrophy since it always affects both eyes and not one.

Does anyone here have it in just one eye. I mean if i had it in both eyes, i would be pretty much blind since everything would be so blurry i would be screwed.

[liz56]

Hi, Mike.

I am glad to hear that you do not have EBMD! That is news that I like to hear.

Your latest questions are best asked of your doctor, since he can actually see what is happening in your eyes. It is true that it takes at least six to eight weeks for the epithelium to "anchor" to the basement membrane. I have heard this from my own eye doctor and from Dr. Foulks, who worked with Dr. Holly and helped direct me when I was first diagnosed. (In fact, it is because of him that I found Rebecca here at the DEZ!)

Your question to those of us who have gone months without an erosion are best posed to those of us on the board who do not have EBMD. Due to my dystrophy, I am never fully free of the threat of erosions. I have to manage my dystrophy in order to stave off an erosion. So, I am sorry that I cannot be of any use to you on that one.

Thanks for the great news!

Take care,
Liz

[Mike2000z28]

Hey i just wanted to give another update. I went to another doctor today at a downtown hospital, highly recommended from my brother in law since he put in his glass eye and did his moms cornea transplant surgery.

As soon as he looked at my eye, not 3 seconds later he said its map/dot/fingerprint dystrophy. He had a resident to take a look as well, however then he touched both my corneas to see my reaction and i didn't feel as much sensation on my right eye(the one with RCE) as my left eye. So he had a couple other eye surgeons take a look. He then asked me if i get cold soars, athletes foot, etc. He seems to think i might have herpes and its a viral infection, but he said they wont know till they take an imprint of my cornea which is tommorow and get some samples of some cells from my cornea. He has put me on valtrax 2 times a day for 10 days and then 1 a day for the rest of the year. Im going back to see him in 6weeks. He said whether its herpes or map/dot, we can treat you so that was encouraging. Much better than last joke of a doctor i previously visited.

[liz56]

Hi, Mike.

Sorry to hear that you have EBMD, but the good news is that once you get it healing, you will be able to manage it.

I love Dwelle eye drops for managing the problem. I probably go a little overboard, but I use them every four hours all day and about fifteen minutes prior to bedtime. I also add them if I awaken in the middle of the night. They have been a great and wonderful help to me. I am looking forward to the new shipment coming in at the end of May or June. Once your doctors sort out what is best for you and they send you on your way, you may want to ask them about using Dwelle to manage the condition. Used regularly, it really helps a lot.

Hang in there-- the good news is that you are getting more and better information about what is happening. The worst part of the ordeal for me, was waking up in pain, losing acuity in my vision, and fearing sleep, all the while wondering, "What is happening to me? Am I going blind? What will I do?" Once I got answers and good treatment, like you are now getting, everything started to improve, and, best of all, I learned that there were many things that I could *do*.

Take care, and thank you for the update.

--Liz