ABMD treatments

[Mcgoldilocks]

Wow it's lonely in this topic but I know I'm not the only one!

I've been having erosions from childhood but only recently found out it is ABMD. When I was a kid the doctor said it was a mild eye infection so gave me Goldeneye and that's what I used for years every time it happened. Then I had 2 major erosion/abrasion episodes where I had to go to hospital to have my cornea scraped off and I thought hang on, there is something going on here. None of the doctors I'd seen had told me exactly what was going on. I went to an optician, he said use drops during the day. I went to my GP and she said 'be careful on planes' and recommended I get laser eye surgery (!!!!).

Got my GP to refer me to Moorfields eye hospital in January, and I finally had my appointment with the corneal specialist today. (Mr Larkin) I've been having an erosion a month since December and lacrilube/day drops/taping eyes down at night clearly wasn't working.

It was hard not to drop to my knees as you would before a God. He said yes it's ABMD and got me bandage contact lenses. I am so happy something has finally been done. He was lovely.

So, at the moment I have bandage contact lenses (the kind you sleep in and wear continously) which I'm supposed to wear for 9 months to heal my corneas.

I really hope this is successful. I'm starting a new job June 16th and I don't want to have to take days off sick and I don't want to see any more people's cringing disgusted faces as I try to explain my condition! (though it is sometimes quite gratifying)

[Lucy]

McGoldilocks, congrats on having a doc who will help you.
1. Did he give you antibiotic drops to prevent infection while wearing the lens?
2. What is your schedule for cleaning? Certainly you aren't wearing the same pair of lens for 9 months straight. I'm curious.

3. The reason I asked about antibiotics is because the very first time I wore a contact bandage lens, the doc didn't give me antibiotics and I ended up with a corneal ulcer. My eye was red, swollen shut and full of "stuff." I had to take a week off work so I could devote my time to putting drops in every hour, then every two hours. 24/7!!!!
Lucy

[Sorriah42]

ABMD Treatments

You're not alone. I haven't heard the term ABMD, but on the main page, it's also called Map Dot Fingerprint Dystrophy, which is what I have. Have the contact lenses been working? Have you had any more "episodes". I'm still looking into treatments. So far, the only thing I've been using is Lacrilube, and it only does a so-so job.

I hadn't thought of it before, but we have a sight center and also an ocular specialty facility. I should see a doctor there as opposed to my ophthalmologist, whom I'm not impressed with.

[Mcgoldilocks]

I think ABMD/ map dot dystrophy are synonymous.

In my right eye, I have been erosion-free since December, when I had the 'debridement' thing where they scraped all of the top of my cornea off to let it heal completely. In my left eye, despite using lacrilube and taping my eyes, I have had just over 1 erosion per month since December when I first started keeping a proper track. Thinking about it, this is a much higher rate of incidence than before. Maybe using lacrilube in the left eye was a bad idea, I don't know.

I've had the bandage contacts in for 1 week now, seems to be going well apart from an unseemly amount of goo in my eyes in the morning. I've been putting in a lot of drops during the day to make sure the contacts don't dry out.

I've been caught out in the past thinking 'this is the answer to all my prayers!' then having an erosion the next day, so I'll reserve my judgement... probably until I've been erosion free for a year. Fingers crossed.

[Mcgoldilocks]

McGoldilocks, congrats on having a doc who will help you.
1. Did he give you antibiotic drops to prevent infection while wearing the lens?
2. What is your schedule for cleaning? Certainly you aren't wearing the same pair of lens for 9 months straight. I'm curious.

3. The reason I asked about antibiotics is because the very first time I wore a contact bandage lens, the doc didn't give me antibiotics and I ended up with a corneal ulcer. My eye was red, swollen shut and full of "stuff." I had to take a week off work so I could devote my time to putting drops in every hour, then every two hours. 24/7!!!!
Lucy

Hi Lucy, no I haven't been prescribed antibiotic drops, no mention was made of the option. The contact lens woman made me an appointment for 3 weeks after she put them in to see how I was getting on, she said put in drops whenever I feel like it and take the contacts out if they feel "funny", and she gave me a spare pair. The doctor scheduled me an appointment for 3 months later to see how they are working and to change the contacts over.

So, I think every 3 months. I don't know actually. Every month would make more sense, I'll make sure to ask in the next appointment (2 weeks from now).

[Mcgoldilocks]

Scrap the last post - I had an erosion last night despite the bandage contacts. I now have 'Ofloxacin' antibiotic eye drops.

For more details of last night's erosion hell, see my shiny new blog.

[Guest]

I am sorry to hear about your setback. Will read the blog in a moment.

I too found that I didn't have a lot of success with bandage contact lenses. Because of my newly reshaped corneas, soft contact lenses did nothing but blur my vision due to the large crater in my cornea.

To get me through the worst of the erosions, I used to tape my eye closed every night after instilling genteal gel.

Maybe this is worth a try, it is not nice but it certainly got me through the toe curling erosions. Now they are just painful not extremely painful.

I wish you well with your new job.

Ian

[Mcgoldilocks]

I was taping my eyes down and using lacrilube but it didn't have any effect on erosion rate, I recently bought Tranquileyes goggles as an alternative to taping.

I actually didn't have them on last night when it happened though, as I was just dozing off and not actually going to sleep. *Sigh. I have to be so vigilant.

I'm worried because I've always woken up early in the morning with an erosion, never in the night.

I think the next step is micropuncture surgery :-\

[Sorriah42]

MGoldilocks - have you had the micropuncture surgery? I just went to the Cleveland Clinic's Cole Eye center where I came away feeling a bit perplexed and confused. I was told that micropuncture would be the best way to go for me, but it's an extremely scary proposition to me (even though my doctor thought absolutely nothing of it). The idea of having scar tissue in your eye, something irreversible, is not pleasant.

He also said I should try Muro 128% (I've been using Lacrilube) so I'm going to try this first and see what happens.

I was also told of a third option which my doctor didn't recommend of taking an oral antibiotic and an eye drop - and I'd have to take the eye drop for the rest of my life (though I don't know if I'd have to take the antibiotic that long), and since my doctor didn't like that idea, and I don't either (I have an issue with antibiotics) I'm definitely not opting for that.

As for ductal plugs or contact bandages, I was told that neither of those were viable options. It's ok about the contact bandages. From everything I've read I wouldn't choose them anyway. I like to swim with my kids in the summer and don't think I'd have the ability to be diligent in making sure they stayed infection-free. He didn't say why ductal plugs wouldn't work - he just said they wouldn't.

I'm going to get the Muro tonight but was given a sheet of studies performed on the micropuncture that I need to read up on.

I'm very interested to hear your response.

[Rebecca Petris]

I was told that micropuncture would be the best way to go for me, but it's an extremely scary proposition to me

Good instinct. Personally I think that anything surgical should be a last resort with ABMD/RCE. It can take a lot of patience to get RCEs under decent control non-surgically but it can usually be done with the right combination of tools.

He also said I should try Muro 128% (I've been using Lacrilube) so I'm going to try this first and see what happens.

You should have considerably better results with the Muro. Lacrilube is just used for its barrier function but Muro is a hypertonic ointment and in some circumstances can help repair a damaged epithelium. Some doctors prescribe our Dwelle drops off-label for this use instead - you'll see Dwelle mentioned in a lot of the RCE threads on the bulletin board for that reason.

[Mcgoldilocks]

The doctors have mentioned the surgical options to me, but they want to continue with my bandage contact lenses for a few months first. I'm also on the antibiotics now.

I'm torn because honestly, I just want this to be OVER and for that reason I'm keen on having the surgery, but I'm also loathe to let scalpel/laser wielding strangers loose on my eyeballs.

I've never been offered this Muro stuff - does it have another name in the UK?

I'm using the Clinitas Ultra 3 drops, which are the UK of equivalent of Freshkote, which is one of the Dwelle family (have I got this right?). 3 weeks in, I've found erosions more frequent but about a fifth of the pain and they don't last as long, so much easier to deal with.

[liz56]

I think that I recall hearing that Muro 128 5% is available only by prescription in the UK. It has just been moved to OTC status here not too long ago.

What you are describing Mcgoldilocks, the less severe erosions, is what I was told to expect when I went on osmotic drops. It took a long time, lots of babying my eyes, using Tranquileyes goggles, etc, but it appears to be paying off.

Sorry to hear that you've been having problems for so long. I did not know that these could begin in childhood.

--Liz

[Sorriah42]

Wow. Thanks for all of that great information. I'm definitely going to give the Muro 128% a shot for a few months before I even consider anything else. Of course, at the price I found it at, I'm glad there's a generic alternative. In the States it is over-the-counter, but I still needed to ask the pharmacist for it. They kept it behind the counter. This might not be true at every store, but where I went it was.

I definitely agree that anything surgical is a last option for me. First of all, I'd have to be put under. There's no way, no matter how numb my eye was, I could watch a needle coming up to it. Secondly, after hearing about problems after Lasik, I just don't want to go there yet. It's awful, but I'm going to try the Muro first.

Thanks for all of your support. Now I know I'm making the right decision.

[Mcgoldilocks]

What you are describing Mcgoldilocks, the less severe erosions, is what I was told to expect when I went on osmotic drops.

--Liz

Really? Much of the scientific explanations of why osmotic drops are better go completely over my head. Is there anything else you were told to expect? Also, I've been using the drops first thing in the morning and last thing at night, and whenever I need to during the day - how often do you think I should put them in? I'm not sure whether I should be letting my natural tears do their job as much as I can (encouraging them by yawning) or using drops 4/5 times per day to keep the eye lubricated.

[liz56]

Really? Much of the scientific explanations of why osmotic drops are better go completely over my head. Is there anything else you were told to expect? Also, I've been using the drops first thing in the morning and last thing at night, and whenever I need to during the day - how often do you think I should put them in? I'm not sure whether I should be letting my natural tears do their job as much as I can (encouraging them by yawning) or using drops 4/5 times per day to keep the eye lubricated.

McGoldilocks, I'm really glad to hear that your erosions are getting "smaller," as my doctor described it.

I was prescribed the drops six times each day and at night as needed. I asked if could use Genteal Gel at night and was told that it was okay. I was kept on them for six months, then, after six months, I was told to reduce the drops by one drop each month. So, it was five drops for a month, then four, etc.

However, since I have ABMD and am not just healing up after an injury, I replaced the first osmotic drop (Dextran 10%) with Dwelle. (My doctor encouraged this.) So, I was still doing six drops each day. Now, I am off of the $50 USD / bottle, compounded, refrigerated Dextran 10% and am happily on the $11.50, non-refrigerated Dwelle drops. I don't feel safe without them. And, they help my eyes to feel more normal than they have in years. So, I'll stick with them for life and maybe get to the point where Cindy, my role model, is-- twice each day (morning and night).

At night, I put in Dwelle, then Genteal Gel fifteen minutes later, put on my Tranquileyes, and actually get some sleep!

I hope that you continue to improve!

--Liz