Muro 128?

[bleh12345]

Hello everyone! I have a few questions about those who have RCE and have used muro 128 drops. My husband started to get erosions 6 months ago, and about a month ago he was diagnosed with RCE. He was, of course, put on an eyedrop regimen of muro128 every 4 hours, 4 times a day, systane ultra every 4 hours, 4 times a day, and systane gel drops, once at night. Now, when we first started the regimen, we had trouble finding the muro128 because it was out of stock at several places. So, he was using just the lubricating drops. He went on like this for a week, and he said his erosions were gone! So, when we got the muro 128, he started using it right away. He said it helped at first, but two days later, he started to feel like there was something in his eye again. He woke up with a really bad erosion. Now, things got even worse because for 2 days we ran out of the gel drops at night and he had an extremely bad erosion. A week ago, he had them 3-4 days that week. I told him to quit the muro completely. I know muro is for corneal edema and not dry eye, so I'm thinking this is the issue. He also has an erosion the next day (no matter what he does) if he cries, so I'm not sure if we should even use muro in those cases because it's like a double does of DRY So, I have a few questions for people who have been on muro and has RCE (or had)..

1. Did the muro 128 make your erosions worse?

2. If it did, did you go to the 2% solution, the ointment, or did you just take it less than 4 times a day? Did those different formulations/times change your reactions to the muro?

4. Did you have to adjust any other variables in order for the muro to really help you? For example, my husband sleeps with his eyes WIDE open. Did you find by taping your eyes or keeping them closed somehow, that the muro DOES keep your erosions at bay by reducing the edema?

5. Did you find you did not need muro at all, because the edema wasn't even that bad? For example, I know that most RCE's are caused by an initial injury, however, is it possible that for some the edema makes it worse, and for some it is just the dry eye?

6. For those that don't use muro, do you maintain your symptoms with just lubricating drops? Right now, he JUST takes the ultra drops during the day, and the gel drops at night. I'm a bit worried because he sleeps with his eyes EXTREMELY open, but his eye healed so fast and his only issue is they only feel slightly dry.

7. Do you guys find that any other variables help with your dry eye? We live in SoCal, and it's more towards the desert area. It's extremely dry air and it can get very hot. We don't use an air conditioner, and the humidifier seems to not work because it just evaporates too fast (during the day). I feel like this problem is worsened because he has night shifts sometimes, and has to wake up in the middle of the dry heat as opposed to the cooler nights.


Sorry there are so many questions. I tried to do a "search" for some of this, but I can't find some specific questions answered. If you don't know the answers to any of these questions, do any of you have any other eye drop/ointment recommendations? (He's already tried Genteal Severe Gel Drops, and they did not lubricate his eyes at all and had erosions non stop.

[emeraldile]

Hi,

You didn't mention that your husband is using protection for his eyes at night. Is he using Tranquileyes? I also live in Southern California. I also sleep with my eyes open (I've been told). And like your husband, I cannot have air conditioning on or even a fan, while I sleep.

I have been using Muro 128 ointment for only two nights, but those two nights have been the best ones since I started getting RCEs.

I switched doctors and that made a big difference. I was misdiagnosed with dry eye. I do not have dry eye. I have map dot fingerprint dystrophy. If your husband isn't doing well, you need better advice. Maybe a different doctor? I have gone through four. The first one did nothing. The second one said I might have Reiter's syndrome and gave me anti-inflammatory drops. The third one said I had dry eye and gave me prednisone drops and told me to come back in ten days. I came back and was worse. He told me to keep using the drops and come back in three weeks. BIG mistakes. I have a good doctor now.

What I can say is that Muro ointment works wonders. But I have to say that it would not work unless I had taken the time to heal first with the Tranquileyes. It was hard work, but my eyes are healed and now I can use the Muro. Unless he has healed, it might not be the best thing just yet.

I was also told to use ONLY preservative-free drops. The only ones that work really well for me are Systane Ultra (preservative free). I set my alarm for every 1.5 hours and I put in more. I don't get out of bed, but I do keep them at the bedside. I start out with the Muro and my small mask (an Onyix) and then I use the Systane Ultra during the night. But I keep that mask on. Keeping moisture in is so important.

I hope that helps. -Janet

[maf19]

Muro 128 drops did nothing for me, other than sting considerably when put in. Muro 128 5% ointment has been very beneficial.