Best drops for EBMD

[katie333]

Hi all,

I've read alot about the great products people are using to combat various dry eye related issues. My doctor was cautious to tell me that not everything a dry eye sufferer does I should do (like lid scrubs for example).

So before I try some out, I'm wondering who has had success with what brand of eye drops especially for help with nighttime RCEs.

[kitty]

I find Muro 128 ointment helpful, but as with all ointment preparations, I find it hard to put in, hard to remove in the morning and generally irritating to my eyes. This one seems to be the most comfortable of all of them for me.

[liz56]

Hi, Katie.

My favorite drops are unavailable at the DEZ store right now. I use Dwelle, and it helps me a lot. Muro 128 5% eye drops for daytime use also helps. The Muro is available in most grocery stores and pharmacies. (I'm not sure if it is called the same thing in Canada.)

An option that I have not tried is FreshKote, which is Dwelle with a lipid element in it. Here in the States, FreshKote is available only by prescription.

Genteal Gel at night does more for me than the Muro ointment that Kitty mentioned (as long as I use it with something like Dwelle or Muro drops!). However, the Muro ointment works very well for a lot of people. I have read about others on this board having terrific luck with it.

When do your RCE's happen? Do they wake you up at night?

--Liz

[katie333]

I just got a script for Muro after a daytime erosion that I am still recovering from. I will start using that as my regular evening ointment. My tranquileyes arrived today as well, so tonight is my first night of that and I'm so excited!

I was told to use it for 6 months every night (the ointment). For daytime I have both the Muro and the GenTeal drops.

[liz56]

Hi, Katie.

Sorry to hear about the daytime erosion. I've had what felt like them, but I was not totally sure, and it feels terrible, like there is no getting away from them.

Thanks for letting us know that you are starting on Muro and with the Tranquilize goggles. Six months sounds reasonable. I was told that after going for at least eight weeks, it was okay to stop. However, I know that my dystrophy is still going strong. So, I am sticking with them. In fact, these last couple of days have me putting in osmotic drops more frequently. My eyes are just acting up, I suppose.

Keep us posted on how you are doing, especially how the Muro ointment works for you. I am thinking of trying it again myself until Dwelle comes back into stock.

--Liz

[katie333]

Hi Liz!

Basically was happened was that a flap of skin on the eye (not sure exactly what part) had come loose, so even when they used the contact bandage it was not helping. My eye was tearing up, incredibly sore and could not open fully. Needless to say my vision severely suffered. They ended up 'ripping' off the dead skin and then rebandaged me and went on from there.

Night 1 of Tranquileyes and I found it to be comfortable though I had a restless sleep. Not sure if that ws related or not. The Muro ointment went in fine and was not too uncomfortable.

[katie333]

Update --

Still having RCE about every 3-4 weeks. I am using Muro 128 ointment and still cycling through different drops during the daytime. I am going to buy some Dwelle when it becomes available and give it a try. Also the Genteal Gel sounds like it is worth trying - I do use the Genteal drops on occasion, still haven't found my favourite drop.

When the condition keeps reocurring like this it's hard to know if something is working or not.

[liz56]

Hi, Katie.

I'm so sorry to hear that you are being woken up by RCE's! It really distressed me (I have EBMD, too), and I hope that you do not suffer from impaired vision afterward. I had that symptom, because my erosions happened over a part of my pupil.

I have been managing / staving off erosions now for over a year (knocks loudly and clearly on wood!) by using Dwelle all day, every four hours, Genteal Gel at night (lots of it and reapply when I happen to wake up in the middle of the night), and Tranquileyes goggles for sleeping. Muro ointment made things worse for me, but when Dwelle ran out at the Dry Eye Shop, I got some Muro 128 5% drops and used them. My corneal specialist, the one who finally put me on the path to healing, told me to put Muro 128 5% drops in my eyes upon waking, wait five minutes, re-administer the drops, wait another five minutes, and re-administer a third time. He said that it prepares the cornea for good healing all day. Then, of course, the idea is to use the Muro drops every four hours or so through the day.

I really hope that you can get this problem under control. It is so distressing, and I really feel for you. I was a real mess when my erosions were at their worst, and it took a long time for them to lessen enough so that I could sleep through the night. It took months of being very strict with the program of drops all day, Genteal Gel each night, and goggles.

Let me know what you try and what works for you.

--Liz

[Lucy]

Wow, Liz! I'm amazed your dr wanted you to use muro drops 3 x upon awakening and throughout the day. On fire!! Those things burn. My long-time eye butcher always advised me to use the ointment at night. I asked how long I can use it and he said "forever." Not sure if that's a true statement or not, but I don't use it only occasionally. I always have a tube on hand though. I also have Dwelle and the other Holly drops. Lucy

[liz56]

Hi, Lucy. Zow! You are so right about how Muro 128 5% smarts and stings. I'm so glad that Dewlle is back! Even though the Muro hurt, it did the job. I was also told by my first corneal specialist, who, of course, never heard of Dwelle, to go on the Muro plan, and he, too, like your doctor, said that I "could use it forever." As it turned out, for some weird reason, the RCE's returned when I was on the ointment for two weeks, so my regular, local ophthalmologist said to stop the ointment and keep using drops. I have been afraid of the ointment since then, but I hear of many, many people who use it with success.

About how often do you use the Muro ointment, Lucy?

I'm now looking forward to the return of Nutratear, because that drop helps me during the day quite a bit.

--Liz

[Lucy]

Liz, I don't use it often and it's usually in my bad eye. I notice when I'm traveling I need the Muro and probably more in the winter other times. We just had our furnace come on, so the season is starting. That means I have to dig out the humidifiers. What a pain. Lucy

[katie333]

Muro drops burn my eyes as well, but the ointment seems to work out ok for me. I'm tracking now 5 weeks since my last erosion (fingers crossed). During the day I am using Genteal Drops, or Refresh if I don't feel I need anything stronger.

I'd like to try some Dwelle though, but now I'm hesitant because this is the longest I've gone between RCEs. Perhaps I will wait and see if things continue to go well.

I'm also using tranquileyes although lately I've been waking up in the morning with my 'goggs' as I call them, sitting beside me on the pillow! I think I need to adjust the straps to make them a bit tighter?

[liz56]

Hi, Katie.

I'm so happy to hear that you've been fending off erosions! I would say not to bother with Dwelle, if you have found something that works for you.

--Liz

[liz56]

Sochlor 5%

I just wanted to remind people who prefer Muro 128 5% to Dwelle, if they do not know, there is a generic version of Muro 128 5%, called Sochlor 5% that is available at the Dry Eye Shop. Muro's gotten to be very expensive (over $22!), so this is a good alternative.

--Liz

[mgshutterbug]

Muro 128 Drops and Ointment

I am relatively new at all this, with neurosurgery (Aug 2010) and diagnosis of DES, EBMD with RCEs as well creating havoc with my left eye, EBMD and DES only in the right eye. My ophthalmologist prescribed Muro 128 5% soln in both eyes, q 4 hrs, Muro 128 ointment every nite, and Genteal gel or drops (or now samples of BLINK he gives me) in between. The corneal specialist I see added requirement for warm compresses 4x daily. While working, I could only do it 2x/day, on weekends, 4x/day.

My eyes are still drying out pretty horribly even w/this regimen, particularly my left eye which has DES severely because neurosurgery damaged nerves to lacrimal glands, as well as created other damage to the eye. So now when I'm not at the computer, or doing something which does not require that I wear my rx glasses, I am wearing Panoptyx clear to grey transitions in the house (w/o rx). I also have to wear them whenever outside, or in the car. The cold causes excruciating pain, as does wind, of course. The glasses are keeping my eyes more comfortable when I wear them. I will be getting rx lenses put into my copper Panoptyx sunglasses, will let you know how that goes.

Anyhow, if you have any more suggestions, I'd be really happy. Also, if you just want to let me know what you're using now, it'd be helpful since this thread is an older one.

Oh, and Liz, thanks for letting me know about the Sochlor. I go to my ophthalmologist tomorrow, so will ask about switching over.