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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.
Hi Freidi,

Yes I have read air conditioning as well as heat especially in the car is not good , as they are drying. I always point the vents down away from my face or off on my side in the car. As to the drops I think less is more, for me just a little seems to be more beneficial than too much. I like to use systane in the day maybe one or two times, more if really in need, and now use the small amount of muro 128 5% at night, right before sleep. Put in just 1/4" lie down close eyes and let it spread under the closed lid by moving the eye around just a little. Don't blink or you will loose most of it in the eye duct. I use a cool wet washcloth on the eye in the morning, then pat dry. This seems to be helping. I know from past experience sometimes the longer between erosions the more severe maybe that is what happened during your trip. I hear the PTK works well for many people, especially if they Don't have EBMD dystrophy. But when I hear of bad outcomes like Mikes and others, it does make one afraid to try it. It does dry the eyes out more, so I am not even contemplating it, because the dryness is the bane of this condition and all eyes get dryer with age as well, we don't need to make it even dryer.. I think we all have to find a doctor who is competent in treating this condition, not just one who "thinks" he is but in reality makes the condition worse. You can email Dr. Karpecki about the Murad question, he is really nice and will get back to you but it might be awhile, or I would just try the less is more technique and see how that works for you. just use the Murad at night, and try a little bit of systane in the day or early evening, cold water compress in the morning. See if that helps. Careful of wind, heat, smoke, and chemicals with strong odors around the eyes. Amonia is an irritant, and I only use natural low odor or no odor cleaners, detergents, etc. No Bathroom spray cleaners that kill mildews and hard water, no orange oil, furn. polish, nothing you can smell that is strong. The eyes are so sensitive and these can be toxic. Beware of haircolors with amonia as amonia is toxic to the eyes (told to me by a doctor). Every small thing can help. If you go on a plane again I would put some muro in and patch it closed with a soft cotton pad and keep it closed for the entire plane trip to avoid the terrible dryness of the compartment. With people like you and the rest of the various health board searchers, they Will come up with a viable cure in time. Never stop searching, we deserve better treatment than so many of us have gotten. Sometimes we have to be proactive and find the cure ourselves. Everyone is different so it will vary on what works for each of us, but people like you who share your stories are truly heaven sent.
We are all learning from each other, and that will lead to the miracle cure or cures.





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