How to stop recurrent corneal erosions

[cebeth]

Thanks, Rebecca. I did contact BFS and they determine the amount of assistance by your income. You first have to have your lastest records faxed to them so they can determine per your situation if they can help you.

[rswisley]

LindaLa, You're experience sounds very similar to mine. Doctors suspect autoimmune as root cause and I'm recovering from PTK performed 2 months ago. I have felt good for several days in a row - way short of a confident trend - but eyes have not been this comfortable in about 6 months. Did you already post your success story in another area of DryEyeZone? Can you tell me what the link is?

[mgshutterbug]

My experience with treating recurrent corneal erosions

Haven't been on for a long time, and unfortunately it's way past my bedtime now. I am attempting to work again, am only in 2nd week. Prior to that, some months ago, I attempted to work, and after less than 2 weeks I had another corneal erosion, have RCEs (recurrent corneal erosions). I am in the medical field, and we are all so pressed for time, and threatened with being fired if we can't meet the quotas as far as treatment time, getting documentation done totally at the same time (which is impossible), that I didn't put drops in every 3 hours as I must do to prevent erosions - went something like 8 hrs w/o drops, and got one huge erosion. My current regimen, which I am dutifully adhering to for the most part as far as drops, are Genteal gel drops every 2-3 hrs, Muro 128 drops 2x daily (Muro is only prescribed for specific eye conditions, tho is available over the counter. It is not for eye lubrication, is specific Rx for treating specific diagnoses), and at nite, I use Muro 128 ointment. For me, that works the majority of the time, maybe 75%/time, in preventing erosions when I open my eyes in the a.m. I tried using goggles too, but since I have to use a cpap mask with chin strap at nite, I just couldn't do it. I'd freak out if I woke up needing the B.R. because I couldn't see and have to wrestle the chin strap off before I can get the goggle strap off. Only tried it once. As Rebecca suggested, goggles may work well for you, or the gentle adhesive on some specific kind of tape, I forget the brand name. I also use Muro 128 ointment 4-5x/day during the day when I have an erosion, per Dr. Hessen's instructions (my dry eye doc at Wilmer, Johns Hopkins). That keeps them lubricated much better than using gel drops, and heals them much faster. I also am happy to say that I have been using lacriserts for about 4 mos. now, with a high degree of success. You must still put drops in frequently, but it has done a better job of keeping my eyes moister, than gel drops alone. w/o frequent drops, the lacrisert will not dissolve in the L eye, the most severe dry eye, which has almost no tear production. She has also prescribed 100 mg doxycycline (oral, not topical) in the past month. She said that at the most recent seminar she went to, that a number of docs have had some success in healing the cornea more quickly after RCEs, and actually decreasing the number of RCEs by strengthening the corneal composition itself. This is anecdotal at this point, no research on this yet as far as I know. But she said, hey, let's give it a try. Too soon to tell for me. Anyone else tried oral doxy?

[Rebecca Petris]

(((Maria))) Good to see you. So glad to hear Lacriserts seem to be doing you some good. Wishing you the very best with your current work efforts!!

[mgshutterbug]

((((Rebecca)))) I'm happy to be feeling well enough physically and mentally to come to the forum. I've had considerable very stressful issues in the past 6 mos or so which just about did me in. I was having a super difficult time with RCEs, managed to get a huge one 2 days before I was to start a contract OT job. All I could see out of that eye was bright white glare. No shapes, colors at all. It was really frightening. Back to the bandage contact lens. The director of the rehab dept. begged me to come on a daily basis. I told her I could only see out of one eye (and actually I can't read medium/small type in documentation with the other eye because of the macular hole in that eye). I really would be struggling hugely with writing notes/evaluations, etc. on the computer. After 3 more days at home, I did agree to go in though I was nowhere close to seeing anything on the computer. I was almost totally out of all funds after being out of work 8 mos. after shoulder surgery. I desperately needed the job. But I got fired after a week because my speed with documentation was too slow. What the heck did she expect? I was honest, told her I couldn't see. After the erosion finally healed, I developed one medical illness after another, nonstop. My immune system is shot. Not sure if from stress, long-standing lyme disease (10 years), or something totally different. Anyhow, I finally got well enough after another another 3 mos to try another job. It was another contract position. And brutal. No time for bathroom, lunch, or drops. So I got a UTI, and another erosion. Have worked 8 days at new job. Got another erosion after 4 days because of no drops, followed by sinus infection keeping me out of work for 3 days. So - now I am putting drops in faithfully after every other patient (about every 2 hrs.) The last erosion is almost healed, though the entire cornea is exquisitely fragile. If I feel pain in my L eye from dryness increasing despite regular drop regimen, I start putting in ointment though I am at work. Can't read to do documentation for 1 1/2 - 2 hours because everything is blurred, but eventually I can see again. Beats getting another erosion every other day. I don't know that I will be able to maintain employment as an OT, or anywhere doing anything with the frequency of RCEs and illnesses I have experienced in the past months. But I cannot stop trying to work. I have no other income. Disability, SSDI, would take 6 mos - yr, and I would receive way less than I could live on, about $1000/mo. No family to help out. So - I just keep praying, and am determined to stick to my eye care regimen at work now, no matter what. I literally have no other choice, do I?

[LindaLa]

LindaLa, You're experience sounds very similar to mine. Doctors suspect autoimmune as root cause and I'm recovering from PTK performed 2 months ago. I have felt good for several days in a row - way short of a confident trend - but eyes have not been this comfortable in about 6 months. Did you already post your success story in another area of DryEyeZone? Can you tell me what the link is?

I posted in the Dry Eye Triumphs section on this forum. Yes our experiences do sound similar. I have an Appt. with a Rheumatologist next week for consult on Autoimmune disorder. I hope you continue to feel comfortable from the PTK. My eyes have been very dry the past week but no abrasion or erosions.

[liz56]

I'm glad it worked for you, LindaLa! Thanks for letting us know!

[cebeth]

Maria,

There is research involving Doxycycline to treat RCE. Check on the internet.

Dealing with RCE is very stressful (besides being so painful-I know I had one on Thursday and one this morning) and I have also found it difficult to work. I've been in heathcare for over 30 years. To much stress taking care of everyone else has worn us down.

I wish you well,

Beth

[mgshutterbug]

Beth, thanks for writing. I haven't taken the time to check out the research on doxy but will do so since now I had to finally quit my job this week because of my eyes and general health decline from the stress, inability to eat, drink at work, and being so exhausted that I literally slept through the weekends from exhaustion. Now I have no health insur. as of Jan. 1, as well as no income, no money. Thankfully, the check from the hours I worked came yesterday, so I will be able to pay my rent this month, my car insurance, and food. Not much else. So unbelievable this country has no national medical insurance.

[rswisley]

I had PRK and stromal puncture surgery by a corneal specialist whose main business is vision correction. He insisted that PRK was the same as PTK except it also included the vision correction. The ophthalmologist who referred me to the surgery also said it was the same surgery that corrected vision. I feel like I'm missing something though, because my surgery experience was very different then LindaLa. Both eyes had RCE, even though the left eye was worse for over 5 years. It has been debilitating for the last 4 months. When I say debilitating, I mean it is impossible to keep my eyes open because of the pain and it takes hours of sleeping to be able to open them. The first doctor recommended Muro128 three times a day and it seemed to work for about a week. So he referred me to a surgeon who referred me to a corneal specialist who does PRK. I had the surgery 2 months ago. The surgery took less then half an hour and was not painful. About an hour after the surgery, I was in extreme pain which was not alleviated by the Tylenol with codeine prescription. I was in a fetal position for 3 days when I was awake (I slept 12-14 hours a day). This is normal for PRK. After surgery, I used Mruo at night and flooded my eyes with Refresh drops before I moved my eyeballs. Many times my eyes would "rip" before I even opened them - all it took was moving my eyeballs. The erosions were still happening and so surgeon told me to use Celluvisc gel instead of Muro about a month ago. Since then, the erosions have been less, but I they still occur about every 7-9 days to the point where I have to sleep for 6 hours after the erosion before I can open my eyes. It seems to be getting better, but at a very slow rate and 2 months after surgery, I still very much feel like the jury is out. During the day I use Oasis Tears Plus, which can only be ordered online. I have tried no alcohol, no sugar, no chocolate - none of them seems to make a difference. My homeopathic doctor has also suspected autoimmune reaction and possibly thyroid problem, but I haven't been tested for that yet. Sometimes the erosions come randomly during the day instead of night. When they do, it feels like there is an eyelash in my eye and it progressively gets worse unless I lay down and close eyes for at least a couple of hours.

[rswisley]

I should also say that I live in the Sierra Nevada foothills of California and sleep with a mister in my bedroom with the door closed. When I visited my daughter in Reno Nevada - a dry high desert area - the erosions were significantly worse.

[liz56]

I'm really sorry that you are having such a severe case of RCEs, Rswisley. The DEZ used to carry a drop, called Dwelle, that helped me a lot. I'm back on Muro 128 5% for maintenance, even though I have not had a RCE for almost five years. Have you tried using the Muro 128 5% ointment for nighttime with the drops for daytime in any kind of consistent routine?

I also found that TranquilEyes goggles helped me to heal.

We all have different factors, but mine were a former injury, dry eye, lagophthalmos, and a corneal condition, called EBMD.

I hope that you can isolate the factors that are affecting you and find some strategies for alleviating them.

--Liz

[Rebecca Petris]

Maria, I read your blog and other posts and I am so sorry to hear about all this. Just seems like you've taken hit after hit.

Now I have no health insur. as of Jan. 1, as well as no income, no money.... So unbelievable this country has no national medical insurance.

Frustrating I know. I have no medical either though thankfully I've been healthy.

Have you pursued state & federal benefit programs?

Getting SSDI (disability)/medicare takes forever... but takes even longer if you don't apply so if you haven't already I sure would urge you to. There are specialized lawyers who do nothing else and it's basically all on contingency basis - so as long as you have, or can get, good medical records, the process itself is easy. Went through all that for my husband - who's basically uninsurable and badly needed medicare. He was turned down twice for SSDI but finally got it after applying for reconsideration - once he got the hearing, it was a slam dunk - however, we did not have records at the time we first applied, so I am sure the process could have been sped up under better circumstances.

Then there's Medicaid... both for short-term care, and they can pick up copays and such that aren't covered by Medicare. They pay for most of his residential care costs now. Some states have medicaid 'buy-in' programs where if you fail to qualify at a particular time because you are (however briefly) making too much money, you may be able to pay a small fee to get it.

Our local DVR office were invaluable when we were going through all that. They had a financial counselor who educated us on little-known state and federal programs that were available, and they even ultimately found my husband some part time volunteer work that is a totally perfect match for his needs/ability.

If I were in a situation where the financial waters were kind of closing over my head and it was just too stressful for me to navigate the practical steps alone I'd be asking for a social worker. - All that stuff was new and totally foreign to me at the time we had to go through it but I'm sure thankful for all the people there are who are available to help.

[rswisley]

I have suffered from RCE for years and 6 months ago it became debilitating. I don't have to tell you, you know the pain and the way it brings your life to a screeching halt. I have taken control of my own destiny, researching diagnosis and potential treatments and coming to my own conclusions and decisions that makes me think I've finally solved this nightmare. We're all different, but if you can hang in there to read this saga, I'm really hoping you can leverage from my situation, because I have immense empathy for you and anyone with RCE. About 10-12 years ago I started getting sinus infections every year around springtime. I was treated by GPs with antibiotics for 2-3 years in a row and the next year a GP gave me 3-4 different meds to address the infection as well as the allergy problem she suspected. After a couple of days I was uncomfortable with all those meds pulling me different directions and I threw all of them away - obviously well before the antibiotic cycle completed. This is about the same time I started developing mild RCE symptoms. Yeast infections are common in post-antibiotic treatment since all bacteria is killed by antibiotics and when you stop taking them, the bad bacteria usually wins in the battle against the good. A couple of years after the sinus meds fiasco, I developed a raging yeast infection in areas where I sweat at the gym. The worst part of the rash started in my underwear and crept up my low back. My homeopath prescribed a yeast-free diet and probiotics and I used Yeast Guard, a topical gel. The rash subsided but recurred a couple of times afterward and the itch on my back under my exercise bra never went entirely away. I developed a bladder infection about a year or two ago and was put on very strong antibiotics intravenously and orally. The RCE became severe about 6 months ago. At the recommendation of an optometrist and 2 different ophthalmologists (and support of homeopath) I underwent PRK. I was desperate to find a solution and the jury is still out on whether the surgery was a good, bad or neutral thing, because it apparently takes 8 months to recover from the surgery. I have had bandage contacts twice, used Muro 128 and a myriad of gels, ointments and drops. I regularly see the ophthalmologist who performed the surgery and the homeopath and they tend to play well together most of the time, but prescribe wildly different alternatives at other times. Two months ago, I stopped eating dairy, wheat, alcohol and sugar - and am very strict about it. A rawness in the tip of my nose went away within 3-4 days and the RCE appeared slightly less severe. I added a strong probiotic, was diagnosed with hypothyroid so began supplements for that and continue my strong Omega EFA (have been taking for 6 months). RCE occurrences have been less severe and the days between them has doubled (used to occur every day or every other day, now I have gone up to 8 days and average 3-4 days in between). A month ago, the ophthalmologist diagnosed Blepharitis (http://www.mayoclinic.com/health/ble...3/method=print), an inflammation caused by oil glands at the base of eyelashes malfunctioning causing inflammation, which in turn causes ulcers on the cornea. It can be caused by bacterial infections and so the underlying disease/infection should be treated. This points to a yeast infection as the underlying cause and the homeopath suggests the recovery will be slow because it takes time to flush all the yeast out of the system. The bottom line is that a yeast infection caused RCE and antibiotics will make it worse and eliminating sugar will make it better. I spend much of my time prepping food during the day and hardly ever eat at a restaurant. I will be talking about this more on my blog http://waysoflifethatwork.com. Good luck with your battle!!

[mgshutterbug]

Update: RCE, no job, no Medical Assistance or SSDI come through yet

Update:

I have obviously not been on the forum for quite a while. Have been busy trying to stay mentally and financially afloat with no job, no ability to hold one at the moment. Not succeeding real well with either one.

Anyway, my L eye is still double plugged, and my tear supply most of the time is in one of 2 extremes, overflowing, or bone dry. I dab at my eye frequently, carefully, trying just to get the tears which have spilled over. Apparently, when I do so, the capillary action of the tears on kleenex draws tears from my eye, and then I'm bone dry. And of course, the tear quality has not improved, so...most of the time my vision is blurry from one condition or the other. But - I'm not in continual pain like I was before with a largely dessicated eye. And I've had far fewer erosions. That is, I did, til I eventually decided stupidly to stop using ointment at nite because my eye was mostly overflowing. Guess it goes w/o saying, that I then began having erosions. My mental state was very fragile at the time, hence the brilliant decision. It was more a giving up on everything than a deliberate decision.

I was lucky for maybe 3 -4 weeks. Then I began w/large erosions again, and a corneal tear hear and there. So - it was back to my eye doc, and eventually bandage contact lenses for awhile. My cornea has finally healed, the scars flattened, but the surface is still very fragile, so she decided to go with the BCL for 2 more weeks. Hopefully, these will be the last visits for quite awhile. Probably will have to be anyway. Funds depleted.

I applied for Medical Assistance. I soon discovered that in the state of MD, the Medical Review Board which decides whether you get it, is simply stalling on everyone's applications - to the tune of 10,000 Marylanders have been waiting over a year, and still no decision made. There is currently a class action suit regarding this, filed Jan. 23, 2013. I have received 2 notices, about a month apart saying they're sorry for the delay, but a decision will be made in 30 days. By law, a decision must be rendered in 60 days. That's not happening.

I applied for SSDI. Nothing moving in that direction either. It hasn't even made it to an examiner yet. I applied at end of Jan. finally. It was a hard decision.

So - will be without eye care any week now. Very very scared.