Diagnosed with map-dot...question about Muro

[neve]

Was just diagnosed w/ map-dot ( as well as severe DES, severe bleph, allergic conjunctivitis, MGD and RCE... all the "good stuff" that goes along with this adventure!) Here is my question...Aside from my new lid cleaning routine as well as azasite, I was told to use Muro drops 3-4 X daily and Muro oint at night. I thought they told me not to use artificial tears (lube) while following this day and night protocol of Muro but now I am wondering if maybe I misheard....I will certainly call on Monday to make sure but my question is this: will Muro provide any moisture to my eyes at all without any supplementation of tears (Systane etc)??? My new Doc wants me on this regiment for at least a month...then will go to Restasis and tweak whatever else needs tweaking. Opinions? Thanks

[Trac]

I use muro 5% drops and ointment along with all of my other eye drops. I think the muro helps a lot. I tried azasite twice and it was awful. The pain made me want to pull my eye balls out of my head. I get a eye lid infection if I wash my lids, they are very sensitive.

[neve]

Hi Trac - Muro oint help my eyes alot as well for night use...I have just begun the drops (3-4 X daily) and so far I can tolerate themquite well (I refrigerate them prior to use to cut the burn.) But my question is, do Muro drops help with the dryness without the use of additional lubricating tears i.e. systane, etc. Thanks...sorry if I wasn't clear on that!

[Trac]

I use Muro drops mainly to collect the filaments in my eye so I can remove them. They are not preservative free so you have to be careful not to use them too often. I take LOTS of other drops also, Serum tears 6-8X daily, Restasis up to 4X daily, Mucomyst 4X daily. Plus fish oil, flax seed and phiorcarpine, plus the 2 ointments at night, oh and doxy. I need all of this if I am going to keep my eyes open. My doctor says I have one of the worse cases he has seen and he is a dry eye specialist.

[liz56]

Hi, Neve.

The cause of my rce's is EBMD (aka map-dot-fingerprint dystropy), too. Muro ointment was prescribed for night-time when I was first diagnosed, and I used the drops every four hours through the day. I would stick exactly to what your doctor says. Muro can make the eyes feel dry in between, because it really is drying out the basement membrane, which is made irregular by cysts and excess moisture. So, let it do its work, I'd say. Adding bland drops may counter the important work that the Muro is doing for those thin, targeted layers of epithelium, anchor cells, and basement membrane. It also may be that the effect of the Muro to draw out moisture will have a similar effect on the tissue of the eye lids, which may cause a dry feeling, but the work of it really needs to happen in the cornea.

According to my corneal specialist back when I had rce's, it takes a good eight-12 weeks for the Bowman's layer to give a good base to the "anchor" cells that attach the epithelium to the basement membrane. However, the underlying condition of EBMD makes this on-going maintenance for me, so even though I am three years out from my last rce, I have lots of discomfort, dryness, and affected visual acuity from time to time. I use Dwelle, which I get here from Rebecca when she has it, and I use Muro through the day otherwise. I'm constantly managing this condition.

Here is a little explanation of what is happening:

"The basal cells are attached to the underlying basement membrane by an extensive basal hemidesmosomal system. This attachment is of pivotal importance in preventing the detachment of the multilayer epithelial sheet from the cornea. Abnormalities in this bonding system may result clinically in either recurrent corneal erosion syndromes or in persistent, nonhealing epithelial defects.

“The basement membrane is composed of an extracellular matrix material secreted by the basal cells. Following destruction of the basement membrane, about 6 weeks is required for it to reconstitute and heal. The epithelial bond to the underlying, newly laid basement membrane tends to be unstable and weak during this period. The epithelium also adheres relatively poorly to bare stroma or Bowman’s layer. Under ordinary conditions, type IV collagen and laminin are the major components of the basement membrane; however, fibronectin production increases to high levels during acute epithelial injury. The basement membrane, approximately 0.05?µm in thickness, adheres to the underlying Bowman’s membrane through a poorly understood mechanism that involves anchoring fibrils and plaques.[7]"

http://medtextfree.wordpress.com/201...al-epithelium/

Best wishes to you,
Liz

[neve]

Hi Liz,
Thank you so much for all your very valuable information. I have one more question for you...in terms of your own map-dot situation, when you were experiencing RCE's, were you told to NOT use lube tears and to just stick to the Muro? My opth was adamant on not buffering the Muro drops (refridge for burn which frankly, the burn is very tolerable anyway and the ointment doesn't burn at all) but something got lost in translation...at first I thought she said ok to use lube tears in between but then it seemed as tho her stated protocol was Muro 3-4 X daily and Muro oint @ night. Am I right in assuming that lube tears can negatively affect how the Muro drops work? I am just a bit nervous about my eyes drying out ALOT during the day but truth be told...lube tears do almost nothing for me and Muro actually feels better than systane or any of the other lube drops. But do the Muro drops lube at all? I guess that is my question!! Sorry for being so wordy...and thank you again for your awesome info and the link you provided.

Cheers,
Neve

[liz56]

Hi, Neve.

I don't know the effect of bland drops with Muro, and I just followed the doctor's orders. I would just skip bland drops (even in between Muro applications), even if the Muro causes a drying feeling or stings, because the goal of using the Muro products is to reduce the amount of moisture in a very specific area, and flooding that area with non-moisture drawing drops could offset the benefits. The advice to not use bland drops to buffer the Muro makes all kinds of sense, because it would dilute the Muro, which I heard takes a minute or so to work.

However, I'm not a doctor, so your doctor is your best resource.

--Liz

[neve]

Thank you Liz...makes perfect sense. Truth is, Muro makes my eyes feel less dry than the bland drops that often make my eyes feel like they are sticky and even drier. I will double check this w/ my opth but I am pretty sure she told me just to follow the Muro regimen, AM and PM. Azasite tonight...heard the burn is pretty bad. However, I will take the burn over an erosion anyday!! Thanks again for all your help!

Neve

[liz56]

Good luck, Neve. Keep us posted on your progress.

Yes, I notice that the sting of the Muro seems to help my eyes moisturize themselves in between drops, and you're right, a little sting is nothing compared to the pain of erosions!

Best,
Liz

[Trac]

Liz, I have a question, why are we using something to reduce the amount of moisture in our eyes? I use muro drops to condense my filaments together so I can get them out my eye, but I have always wondered about the value of putting saline in dry eyes. Any thoughts?

[neve]

Thank you, Liz!

Neve

[Lucy]

Neve, you are lucky to have gotten such good information from Liz! It's no fun having map-dots or EBMD, no matter what you call it. It sounds as though your doc is on the right track with the Muro treatments. My doctor told me I could use Muro ointment "forever" and i am not suggesting you do that. Good luck with your treatment and I'm sure Liz will be happy to talk with you as you go through this. I have not been on the site in a long time and wanted to say hi, especially on a map-dot post. Lucy

[neve]

Neve, you are lucky to have gotten such good information from Liz! It's no fun having map-dots or EBMD, no matter what you call it. It sounds as though your doc is on the right track with the Muro treatments. My doctor told me I could use Muro ointment "forever" and i am not suggesting you do that. Good luck with your treatment and I'm sure Liz will be happy to talk with you as you go through this. I have not been on the site in a long time and wanted to say hi, especially on a map-dot post. Lucy

Hi Lucy and thanks for writing to me...and for saying hi! Liz gave me absolutely priceless information, made it so very understandable for me and let's face it, especially for people such as myself being recently diagnosed with this map-dot and all that goes along with it, understanding what is going on and why makes a HUGE difference. I have no problem with the Muro drops 4X daily and no probs with the ointment except that they are both so expensive and the ointment is kind of hard to apply (and such a small tube, too!) But, whatever it takes, I am doing it. Liz's explanation made so much sense to me and funny thing is, the Muro, even tho it is "salt" makes my eyes feel less dry than the other drops i.e. systane, genteal etc because with those drops, my eyes feel like glue after about 5 minutes. So, tonight begins my Azasite which I have heard BURNS but that's ok. Heard Muro drops burn too and I have no problems with them. Some burning is way more preferable than having erosions...anyday!! My Doc said that after at least month or more of Azasite, we will probably go to Restasis...I was given the name of an organization that helps people afford it that have no insurance. So, I will be applying to that with my doc's help.

Thanks for saying hi, Lucy! I think I too will be on Muro forever but I am ok with that as long as it is needed for the health and safety of my eyes. Always an adventure, isn't it??!!!!!
Helps very much to know such great people on this forum, you being one of them! Talk soon...Thank you!

Neve

[liz56]

Liz, I have a question, why are we using something to reduce the amount of moisture in our eyes? I use muro drops to condense my filaments together so I can get them out my eye, but I have always wondered about the value of putting saline in dry eyes. Any thoughts?

Hi, Trac.

The discussion of DES in general certainly seems derailed with a discussion about "drying" the eye. However, with the condition that Neve and I both have, it is complicated by the fact that underlying our outermost layer of the cornea, we have excess moisture that does not allow the epithelium to adhere properly, so we have painful RCEs in which the nerve-rich layer of the eye that responds so painfully to contact with something so small as an eyelash, for example, tears off. For some of us, if it tears off over the pupil, it can disrupt our vision for a couple of days; for all of us, it is excruciatingly painful, a sharp pain that causes the eyes to water-- far beyond the already-terrible stinging pain for DES.

So, what Muro 128 5% and Dwelle do is that they *do* "dry" the eye, yes, but they dry the underside of the epithelium, drawing moisture out. The surface of the eye gets better moisture, because the excess moisture underneath is pulled out to the surface, just like when you salt an eggpant or other food to prepare it. The moisture on the inside is drawn out by the saline / salt to where it will work rather than left, like blisters, underneath, where it causes harm.

So, I would never advocate to use this kind of saline solution if you do not have EBMD. However, if you are using them with success, then that is great. I just don't know much about filaments.

Now, the saline solution that you mention could *also* be understood as being the kind of saline used to wash and put in contact lenses. That is quite unlike Muro 128 5%, because it is so light, and it is made to mimic tears, which naturally have salt / saline in them.

Sorry if I had been unclear. I was only addressing the issue of EBMDs manifesting as RCEs.

Best wishes,
Liz

[liz56]

Hi, Neve and Lucy!

Neve, you're welcome, and feel free to PM me if you have questions or just want to vent. This condition can be so isolating, because it is rare and takes a long time to heal up.

You're in great hands with Lucy. Lucy was the first person to greet me when I got to the DEZ, and I've learned so much from her. She has great tips and good ways of helping us to cope.

I should say, "Thanks," to Lucy.

Best wishes,
Liz