Diagnosed with map-dot...question about Muro

[Trac]

Wow, sounds awful. Thanks for the explanation. I have an optometrist who explained the muro once, thanks for the recap. My ophthalmologist put me on muro drops and ointment a couple years ago, but told me to discontinue the drops while I started using mucomyst a couple weeks ago. I am still using the muro drops on occasion because a couple months ago both my doctor and myself agreed that the muro seemed to be helping a lot.

[spmcc]

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!)

My doctor said that melting Muro ointment prior to putting it in the eyes helps with instillation. He suggested putting the tube in hot water for a few minutes to make the ointment runny. Maybe try that?

[neve]

Will try that tonight! Thank you!

[mgshutterbug]

Neve,
I have EBMD also, RCEs, MGD, and anesthetized eye as well, the latter the result of botched surgery for trigeminal neuralgia. So I've been using Muro drops 4x/day and ointment at nite for a little over a yr. I haven't had a new erosion for 5 mos, but I also have to use 7eyes rx sunglasses, regular glasses, and bifocal intermediate glasses to try to keep moisture in eye. I tried a punctal plug for 6 mos, early in this journey. Not sure whether wrong size was chosen, wrong shape, or what. It was v. uncomfortable from start, and got much worse. But it did keep my eyes moister. I am going to try them again w/a different corneal specialist as soon as I can get another appt. But w/o the 7eyes glasses, I would be having to keep my eyes shut all the time w/ointment on them. I wish somebody would come up with a smaller frame. The Zienna I bought, which I'm wearing, look like 70s glasses, the frames are so huge. But they do the trick! At least I can see to the extent that I can. They've helped keep me somewhat sane, and decrease pain, improve focus since my eyes aren't quite as bone dry as they were with regular glasses. Best of luck, Maria

[neve]

Hi Maria -Thanks for writing! The first opth I went to (less than a month ago) wanted to do plugs on me that day and I said I wanted to wait a bit. The next opth that I saw last week did not want to do plugs( as she diagnosed me with bleph,) never even mentioned them, and the route she is taking is Muro 4x/day and the oint at nite as well as Azasite. I don't know what you mean by 7eyes Rx sunglasses...I am sorry to hear about your surgery for trigeminal neuralgia. It's astounding how much pain and uncertainty goes along with all of these DES disorders. But it's wonderful that Muro has helped you with your erosions. Truly. I think the next step for me will most likely be Restasis...now all I have to do is figure out how to afford it...and hope that I am among the percentage that it helps. Have you been on Restasis? How about Azasite?

Anyway, it's Muro time! And I am off to dreamland (and oinrment land!)

Best of luck to you, too, Maria!! Goodnight!

Neve

[Trac]

Neve,
Restasis helps my eyes feel moister, but I get better results when I use it 4 x daily instead of just twice a day. The eye moisture goggles/glasses that Maria talks about are a life saver. I wear Wiley X, if my eyes are open I have these on. I tried Azasite and it burned like crazy, I had to go off it. I also use muro drops, muro and FML ointment. What helps me the most is serum tears and mucomyst, I get a lot of filaments in my eyes.

Best of luck

[neve]

Neve,
Restasis helps my eyes feel moister, but I get better results when I use it 4 x daily instead of just twice a day. The eye moisture goggles/glasses that Maria talks about are a life saver. I wear Wiley X, if my eyes are open I have these on. I tried Azasite and it burned like crazy, I had to go off it. I also use muro drops, muro and FML ointment. What helps me the most is serum tears and mucomyst, I get a lot of filaments in my eyes.

Best of luck

Hi Trac- -Even though I have a diagnosisi(map-dot...YUCH!) I am in the beginning stages of this...I don't have any experience with moisture glasses,FML (what is that exactly?) or serum drops. It is pretty much a given that Restasis is the next step...probably within a month. And I am going to have to try to get on a program to get it low cost/free. I was given the name of one (RX Hope) and we'll see. I am willing to do it 4 times a dayif needed but haven't crossed that bridge yet....I guess I will have to see what twice daily does. How long were you on twice daily to know it had to be upped to 4X? Heard that burns, too. Well, just another day in the life of a DES lottery winner!! Wishing you aq comfortable, pain free day!

Neve

[mgshutterbug]

7eyes glasses

Neve,
7eyes is the name of the company that makes the glasses I wear, which are referred to as "moisture chamber" glasses. They used to be made by Panoptx, but 7eyes bought them out. Rebecca has these glasses in the Dry Eye Shop. For me, they've been nothing short of a God-send. I wear them all the time that my eyes are open. My eyes are way too dry and hurt way too much to take them off even for 5 minutes. A number of us use these, or Wileys, or goggles or whatever we can find. I think the Panoptx were originally designed for motorcycle riders. These glasses aren't exactly smart looking, but they do the trick for me. You can put prescriptions (Rx) in 7eye glasses, and a number of the others. You have to check and make sure though.

Good luck!

Maria

[Trac]

Neve,

I have been on Restasis for 2 1/2 years now. I increased my dose about 2 weeks ago, because I read on this forum that 4 x daily was way better and my daughter was getting married in a few days, so I really wanted to do everything I could to keep the moisture chamber glasses off during the wedding and reception. It did not work, but I had the glasses off for the pictures. FML is a steroid. I love steroids, they make my eyes white and reduce the swelling, but they cause my eye pressure to go way up. So FML ointment is the only steroid I have found that does not raise my eye pressure. Serum is drops made from your own blood, they are great, but very expensive.

I have tried a lot of different things over the past 2 1/2 years, you don't start off with the most aggressive treatment in the beginning. The moisture glasses are wonderful for me. I wear mine all the time. My restasis is covered by insurance it cost $20 and it last way longer than a month. You can use each vial for at least a day, I use mine until it is empty. You can also go online and register with Restasis and get a coupon for Restasis.
I hope this helps.

Trac

[doc k]

Hoping to add to the discussion:

I don't think your OMD really cares whether you use artificial tears in between your hyperosmotic drops. If you feel you need them, I think they'd say to go ahead. Of course you should call them for clarification.

Hyperosmotics don't really "dry" the eye, as has been mentioned, just the epithelium .http://www.ncbi.nlm.nih.gov/pubmed/6172765

The osmotic pressure of a really salty drop will draw water molecules from the epithelial/basement membrane interface. http://hrcak.srce.hr/file/21952

[neve]

Truth is, artificial tears make my eyes feel gummy and drier...so far, Muro makes my eyes more comfortable than any other drop I've tried. In the AM, I usually like to clean out the Muro ointment residue with Unisol 4 but for some unknown reason, my opth says don't use it. Why? No clue... so that is yet another question for me to ask about. Seeing this opth is like being in the eye of a hurricane...fast and furious!

Thanks for your input!

[kris27]

Liz, thank you for this clear explanaton of the use of the saline (which I could not understand at all!) in the Muro 128.

[Trac]

[QUOTE I wish somebody would come up with a smaller frame. QUOTE]

Mgshutterbug. WileyX makes a very small frame style "blink", but they are so small they are kind of bug looking. I use them as sunglasses, because they are dark you cannot even tell they have foam padding. Then I wear WileyX brick in clear because they look more normal sized. Like you I could not keep my eyes open without these goggles even with all of the drops, ointments and pills that I take.

[mgshutterbug]

I'll have to take a look at the Wiley X for reg. glasses. I just dropped $850 for 2 pr of the Oasis/Zienna (I can't remember name!) glasses, so I won't be buying any more for awhile. I, too, need both Rx sunglasses and regular clear glasses, plus computer glasses, so when I buy glasses, I just can't eat that month!!

[Trac]

My WileyX's were substantially cheaper. The doctors office makes a 100% mark up on the frames, I don't know about the lens. I know about the mark up because I have picked up my WileyX glasses from the factory and they original receipt was with the glasses. Someone said insurance might pay for the glasses, since we need them to treat dry eyes, but I never bothered to try to submit it. You might want to look into that.