It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Eye & Vision Message Board


Eye & Vision Board Index


That's just great Mike! There's a sigh of relief after surgery!

It's possible I'm one of those folks that might need a follow-up. But hey, I'm not complaining! I didn't notice the eye dryness for a while...and it's only at night. Doesn't bother me during the day.

Possibly my medication didn't help (I was on it during surgery). It may have effected my healing. But my scratches are minor and few, it doesn't get me down.

I have to say, I have a great doctor too. I heard he maybe leaving :( Talk about a man with a passion for what he does!

I'm so happy for you. RCE can really bring you down, getting it fixed can restore the spirit!
Hil dall,
Sorry to hear you are suffering. Those of us who have been through this know how trying it is.

I was just talking to a friend the other day, who asked me how my eye was doing. My reply, in short, was that it isn't 100%, I do still have to put a lubricant in at night...but that is a minor inconvenience considering all the misery the RCE brought me.


PTK changed my life. I'm glad I had that option.

Evie
Freidi34,
sorry to hear you are still battling RCE. Before my surgery, I think I only could make it a few days when I didn't wear a lens before I had an erosion. That went on for over a year. I still had them with the lens, but about every 4 weeks until it became more frequent.

I'm doing pretty good these days (17 months post PTK). Sometimes I get little scratches at night if my eye gets dry (tends to happen when I'm on a particular medication). I still MUST lubricate my eye every night. It is rare that I don't do it once in the middle of the night. So...I'm not 100%, but I am not disappointed. It's totally manageable. I'm using Genteal Gel Severe at night. It seems if I put it in around 2:00-3:00 am...I can make it until morning. If I don't put it in, I risk having the type of 'scratch' or 'small erosion' you describe.

That is my experience. Right now my sibling, who had made it two years without an erosion, had a relapse and is going through BCL therapy again.
Hello Freidi,

The RCEs really does effect your whole life. Homeopathy helps the body heal itself, it can work miracuously for some things, for the RCE it has helped me so that they have been less severe and shorter, but was not a cure. Certain remedies gave me 3-4 weeks between erosions, but the problem was it did not last. I am still getting them weekly and still searching for more relief. I cannot wear the bandage lens it realy bothered me and had to remove it within a day both times it was tried. Maybe these new drops of Mike's might help, I'll try anyting once for some relief. But, i am wary of the anti-biotics, I just want a more natural approach, that is for myself. I am sensitive to prescription meds so I have to be careful. Good luck and keep us posted on your progress, i will let you all know of mine as well and if I find something that helps.
For all those suffering with recurrent corneal erosions, abrasions, ulcerations,ulcers, or whatever your doctor may call them: I have been suffering for 3 years now, 2 of them pretty regular with these things. The fustration of finding an eye doctor who knows what to do is unbelievable. I have had many proceedures, some more painful (if you can believe that) than the worst erosions, and all of them failed at stopping them. And many of us have the constantly changing vision as well as the glare and poor vision during and after these episodes. Trying to do the research on this with one seeing eye has been quite difficult at times when I am in the midst of an episode, but I have no choice because my doctors have been of little help. And sometimes one erosion runs into another.

I have found some relief but do not know how long it will last, but I am very hopeful and it working quite well so far for 2 weeks now. It is the Muro 128 5% ointment. Used at night very sparingly 1/4" or so, and it is helping me alot. Some have been using this on these health boards that is how I originally found out about it, but my doctor at the time (2 years ago) said " it won't work, it only keeps the swelling down, don't bother using it" so I didn't. this same doctor did a laser proceedure on my eye where I was in so much pain for days I wished someone would just shoot me. It also, did not work at all. Now I am doing my own research, and found out that the other nightime ointments can do more harm than good and should NOT be used. Dr. Paul Karpecki talks about this in his papers titled "The effort to cure Recurrent erosions" , you can do a search for this as I am not allowed here to post any website. Now i know why all the ointments i use to use at night seemed to make the erosions worse for me. I would tell the doctors that but they seemed to think they knew better. The new research shows this as Dr. Karpecki tells fellow eye doctors "Never prescribe artificial tear ointments for recurrent erosion; they may have the opposite effect of hyperosmotics (Muro 128), and may actually induce recurrent erosion." So True!

Also, he says, "what should you not use for RCE? Bland artificial tear ointments. " Also, I have read not to use bland artificial tears during the day either. Just as the watery tears of your eye this can worsen symptoms. Instead use tears with a glycol base like Systane, which seems to be helpful during the day without immediately drying the eye further like other tears. Also, there are some drops by prescription only, Freshkote recommended by Dr. karpecki, and Dextran recommended on this board. i have not yet tried these but will ask my new doctor about them. And Homeopathy in some cases can help reduce amount and severity but it can be hit or miss, but isn't everything with this conditon?

anyway if this helps even one person who reads this board it will be worth it to me, I wish I had the means to start a foundation about this common but misunderstood disorder which is so disruptive to one's entire life, not to mention can be miserably painful. And half of the misery is dealing with the incompetency and lack of knowledge of what works and what doesn't with the deluge of "eye doctors" out here, who are less than helpful most of the time, with a few exceptions like Dr. karpecki. If I lived in Kentucky I would definitely go to him. He also wrote "Put an End to EBMD" for those of us who have erosions due to that dystrophy. I will keep you posted on new things that work for me as I try them. I use sunglasses with sponge around the inside to keep out wind or dust if walking, great care washing the eye area, never rub eyes, stay away from smoke, or barbeques unless you get a pair of onion gogles, also, with a spongey inside to keep out heat and smoke from the grill. A light colored pair of glasses like a blue can help with computer screens which I think may add to this problem.

What has not worked was Stromal Puncture, nor does Laser burning or "welding of the erosion area" Horrible pain should be reclassified as torture, and Did not work, and left a big burn scar on my cornea which every doctor asks me how i got that including the idiot who did it to me, he asked a year later" Did I do that to your cornea?", I reminded him he did and he had nothing to say. I no longer see him. (The gov't should hire this doctor to do the eyes of Al Queda terrorists what he did to me with his trusty laser, once the numbing drops wear off, believe me they will reveal all their secrets, no waterboarding necessary. I personally would much prefer the waterboarding.)
Also, I no longer use standard ointments, artificial tears without the glycol or heavier protein in them, bandage contact lens for me was never comfortable and I could not use more than 24 hrs. without removing due to discomfort.
Pressure patches, what they did to me in the emergency room, I ripped that off when I got home it was awful and added to the pain. Leaving the eye alone and closed or with a soft cotton eyepad bandage lightly taped on the area for more severe erosions helps to get thru the first day or two till relief sets in. Any questions, just ask. Good Luck in finding the cure or management. The antibiotic, steroid, treatment holds promise but is not 100% effective. But worth a try. And of course the Murad 128 5% ointment at night.
Judy, you are really amazing! Thank you so much for sharing EVERYTHING!!! Since you became an expert (unfortunately since there are so many incompetent professionals out there) I use Refresh Plus during the day as my artificial tears. From what you described, I have a feeling that it might not be the best tears for me to use. Just a curiosity: As soon as I was diagnosed with RCE, the doctor at the time prescribed me Muro drops 3 times a day and the ointment before bed. I was erosion free for 4 months under this regime and then I flew to Israel where the climate is extremely dry. One month after I came back from this trip I had a massive erosion that lasted 24 hours... At that time, the doctor was able to see me and made a small debridement of the loose epitelium that I had due to the erosion and she told me that she should had put me a BCL to travel since the air conditioned on the plane could very much induce erosions....
So the question is: What Dr. Karpecky would say about this treatment? (muro drops during the day and ointment at night). My question is: after a while the cornea could be healed, and then after so much dehydration, maybe would starrbeing prejudicial instead of beneficial? Tks!!!
[QUOTE=Freidi34;4001453]Ebmd,

The doc always say he sees "maps" when he examines me. [Snipped]
One more thing: he claims that PTK for me is not the best option since I am almost 20/20 in this eye and with the PTK he would touch the curvature of the cornea, making me farsighted... it is the second doc who tells me the same thing... but he said that if the superficial keratotomy does not work, he would consider a PTK, even if my vision changes...[/QUOTE]

Hello Freidi,

If the doc says he sees "maps," he's probably referring to map-dott-fingerprint dystrophy (I wrote d-o-t as "dott" because this site often kills words associated with websites). It's a type of epithelial basement membrane dystrophy, and very common, especially in those with RCE.

As far as PTK changing the refraction... that's possible, but for me it didn't make my prescription change. It did, however, make my vision clearer because it smoothed out all the rough patches where the erosions occurred.

I remember thinking my PTK had failed within the first month, but none of those erosions persisted, and I've been erosion-free since. My eyes are drier now, but Genteal Gel (Severe) at night works like a charm for me.

best,
ebmd
Yes, FreshKote works for me. Easier to get and cheaper, Dwelle works in the same way.

Prayers to you all who are suffering from RCE's!
Hello Gentealgel,

Nice to hear from you again on this board, I am glad you are well. I just started using freshkote, but got a small erosion first night. I will use for a couple of weeks and see what happens. Dwelle didn't work so well for me. I am thinking of trying the Dextran because it has no presevatives and my eyes are so sensitive.

Mike, how long will you stay on the doxy, I thought it was only a treatment for 2 months, what is your treatment? It is great you are doing so well and letting us all know your results, it helps alot of us, you are on the cutting edge of the new treatments. Now, that you are off the steroids, will you stay off these? I am kind of scared to start them because of the eye pressure but I will be taking Lotemax which is a steroid that hardly raises the pressure at all compared with the : (is it prednisone) other one and it is recommended to work just as well. You are off steroids now, correct? Good luck with continued success and no more erosions.

Friedi, just a note to tell you that EBMD is one of the most common conditions the eye care doctor sees in clinical practice. According to what I have read it affects nearly 42% of individuals across all ages, and as many as 76% worldwide for those 50 yrs and up. It says up to 33% of patients with EBMD experience severe RCE during their lifetime. New treatments are springing up like the steroid/doxy, etc. Hopefully they will have more soon that helps everyone. Are you trying the steroid/doxy yet? maybe that will cure it. i am going to give it a try soon if I cannot control mine with drops and muro. But am doing one thing at a time first. Good Luck Friedi, let me know how you are doing. It was great to speak with you the other day, stay in touch.
mike1961,

I just signed up to HealthBoards mostly to thank you for all the great advice and personal experiences with RCE treatments you have posted. I've had this for about two and a half years now in both eyes, and your advice has made a world of difference as I have read it during the last two years or so. (Though I appreciate all the other advice by people here too.)

Your suggestion of training yourself not to open your eyes when you wake up and first putting in drops in the morning has improved things a lot. (Though for me, I find putting drops in the outside edges of the eyes after pulling them a tiny bit apart works best, rather than inside by the nose.) Usually I use Refresh Classic (with povidone) or Nutratear for that -- and I generally do it every time I awaken in the night, too (which can be hard when I am tired and sometimes I manage to go back to sleep first, but usually I do it to be on the safe side).

I've avoided PTK this long for a few reasons (dry eye worries, cost, time, not wanting to risk making things worse) and in part from reading of your experience.

The optometrist I originally saw prescribed Muro which did not work well for me at all (and I could never get the hang of putting the ointment in my eye, so I only used the drops), and did not have much else to advise beyond lots of generic drops and flaxseed oil.

It had gotten to the point of sometimes multiple episodes a night, when I said just having a problem when I woke up would be an improvement.

I had some success in reducing frequency and duration with Dwelle and related drops until they were unavailable from the internet company that sells them (it is supposed to be coming back).

Based on the discussions here, I found an ophthalmologist to prescribe Doxycycline pills 50mg twice a day last November, and it has improved things a lot for me, although it is hard to separate out that success completely from the drops. The doctor had recommended PTK, but I suggested Doxy based on what was talked about here, and getting printouts of related studies. I took Doxy for about two months (no steroids), and things got a lot better. Then I stopped, and also ran out of Dwelle a while later, and things got worse. Now, I am taking Doxy again and using FreskKote (prescription, though the optometrist was reluctant at first to prescribe it as it was new to them) and things are improving again.

I may still consider PTK down the road, but I hope to hold out until there might be even better treatment options. I'm not too keen on taking antibiotics (like the risk of c. difficile), but it seemed like the lesser issue right now compared to poor sleep and pain turning my life upside down, and I am hoping that if my eyes heal I can get off them. I take various pro-biotics from a health food store every day to help with that, and yoghurt (though not at the same time as the antibiotics, obviously, though I take the Doxy with toast to avoid stomach upset, which is not ideal as it is best on an empty stomach).

I still get what seems like erosions once a week or so, especially after being exposed to dust from cleaning or reading old books, but they are much more manageable things that just last a few minutes, not an hour or more, and they seem to be getting less and less frequent, and I can also go longer between drops like when using the computer. I've also found that FreskKote and Dwelle usually helps with the discomfort of small erosions better than other OTC drops.

Anyway, I just wanted to say thanks again for the help and inspiration. Your advice has made a big positive difference in the quality of my life. :)
Has anyone mentioned taking flax seed oil? My doctor recommended 500 mg twice/day. Not sure it has anything to do with it, but my RCE seems to have settled down, and the dryness has somewhat decreased. I frequently still need drops first thing in the morning for comfort, but have not had any erosions for awhile.
Mike,

You should become an eye consultant for RCE's, you certainly know more than 98% of all the eye doctors out there. Your post was amazing and appreciated by all I'm sure. I have been doing much better on just Muro at night and Dextran by day 3X. It is inconvenient though since it has to be refrigerated and I am out working. But I do my best and use it when I can. Have not started the doxy steroids yet, but might need to if this doesn't keep working. For now though it has been heaven instead of the usual hell of having these all the time. Almost a month erosion free and that is a Godsend for me.

Friedi, how are you doing? Genteal Gel glad to hear you are doing well, and by the way the Dextran drops are great. No burn, no sting, just very relaxing and soothing. Even Freshkote was a bit strong for me and could burn when my eyes were very dry. But the Dextran never does. Good luck to all, keep on posting your individual progress.
[QUOTE=Freidi34;4116659]So, I will look into your past history and see if I couls relate even more.. [/QUOTE]

Funny.. I just noticed that this website claims me as a "newbie" with only 3 posts, but it's probably just that I'm rarely on here anymore. My old posts on the PTK experiences are still on here. Don't spend much time looking though - I think most of my posts were details about what to expect during the surgery and immediately after, so you won't learn much. There were so few symptoms long term that there really wasn't much to write about. The old RCE threads go back years and years and years....
Hi Moritz! Do you have pain now? You say you use lots of gel... when and how often do you put the gel? How long have you suffered with RCE?
Every night before sleeping Vit-A Gel in both eyes and drinking lots of water. I've rce since 20 years with occurrences of once a year.
Im an old member here who cannto remember my old username or log in. Its been 3 years since i last posted.

I just had an appointment with my optho and after 5 years of RCE in my left eye (4 years in BCL). I have finally been given the all clear and told I can stop wearing my BCL. :)

Dont give up hope. I know that 4 yeas in BCL seems like a long time but after the first year i barely even remember that its there.
[QUOTE=Freidi34;4222691]Hi Ebmd,

I have the plug in and my dry eye is much better. I do not need to put artificial tears anymore like I used to so many times a day... Looks like my dryness was worse than yours since the plug does the job just right... the eye is not over wet. Good to hear from you and I am wondering until now where is Mike? He, together with you were the best advisers in town... I do hope he is doing well. All the best and I will keep you posted.[/QUOTE]

Hi Freidi,

Glad the plug is working well for you. Your dryness does sound worse, but maybe it will eventually go away, as it mainly has for me (though I can't remember if yours started from the surgery or before).

Yeah, people have cycled in through this RCE thread (or former ones) for a long time. I think I've been on and off for about 5-6 years, and Mike the same. I went about a year without being on here, so my user stats now list me as a newbie - all those posts long ago to be called a newbie, kind of cracks me up. I'm sure Mike will reappear sometime. At this point there is so much RCE information on here and good advice from many. I got on here a few years after PTK cured me; I'm not sure if the board existed back then, but I wish it had.

Hope your eyes continue to not get in the way of your life/sleep/work. What an enormous drain it can be.

all the best,
ebmd





All times are GMT -7. The time now is 03:28 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2017 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!