RCE Treatments & Results - anything I havent tried?

[Tempestuous]

Hi everyone,

I've got RCE and wanted to share my experiences of meds that worked or didnt so that perhaps you could try something that helped me and with your feedback perhaps I could find something else to try that I may have missed.

I've tried to be as brief as possible but the list of treatments is still obscenely long. I've broken it into sections: History, Meds & Results and Current Experiments.

History

I've RCE in both eyes and the last 2 years. Map dot I believe.

About 5-6 years ago I had an injury to my right eye and there followed a few minor rips until 2 years ago I had a major rip in both eyes.

I suppose its worth trying to define major/minor so you know what I'm talking about.
minor = up to 2 hours of uncontrollable tears pouring from affected eye. perhaps a bee sting level of pain.
normal/mid level = 24 hours tears pouring from affected eye. Pain similar to dislocating a knee.
major rip = 48 hours solid tears from the affected eye, no sleep for several days. blinking or moving eye causes intense pain. Level of pain similar to breaking leg and dislocating knee and trying to walk on it.

I also found I became very sensitive to light and that I operate to a set pattern.
up to 1 hours exposure to daylight or shop lights or even a normal persons house lights whilst wearing category 3 sunglasses and a cap will start short stabbing pains in the front of the eye.
@ 2 hours exposure to light I get a throbbing pain behind my right eye only
@ 3 hours exposure I get a pounding sensation at my right temple.

If I remove myself from light at stage 1, I suffer a minor rip or none.
@ stage 2 minor to mid
@ stage 3 mid to major.

Over the first year I suffered dozens of major rips and a mid level rip every time I slept which was perhaps 1-3 hours every few days.

In the second year I found a new specialist who made an incredible difference.
Now its the end of the second year and my eyes have slipped back and we are looking for new options.

What set me back recently was
1 - a camera eyepiece nudged in my right eye taking a section of the surface layer off
2 - the chemist mislabelling the medicine so I was using out of date drugs and risked infection from using preservative free drops for 1 month rather than 1 day.
3 - too much cycling - the wind got behind my sunglasses.
4 - inhalers? just read something that suggested inhalers can cause a problem? Any info on that? So its either see or breathe now that I've recently developed asthma?

Meds & Results


Year 1


Celluvisc 0.1% w/v (Carmellose sodium 0.5%)
for day use

Lacrilube (White soft parafin 57.3%, mineral oil 42.5%, lanolin alcohols 0.2%)
for night use

Chloramphenicol 1%
Prescribed @ Eye Hospital every 3-7 days for 24 hours after each mid to major rip.

Contact lens eye bandage in right eye
It took 4 nurses to hold me down to put it in!
It ripped out a large chunk of my eye the next day.
My current specialist says with the underlying damage pattern of my eyes that I should not have been given it in the first place


Result - Useless.
I found it far more effective to blindfold my eyes for 2 weeks at a time. Though obviously its not a good way to live!
Major rips about 1-3 times a month.
Mid level rips 1-3 times a night or 2-3 times a week
I'd wake with a rip as soon as I entered REM sleep, if not before.


Year 2
New specialist ( my current one and an actual corneal specialist a opposed to the several general eye specialists I had seen before)

Doxycycline
100mg initially, 6 months later dropped to 50mg maintenance dose.
Still using

Prednisolone eye drops
0.5% initially morning and night,
3 months later dropped to 0.1% for approx 4 months and applied morning only
no longer in use

Vismed 0.18% preservative free (Sodium Hyaluronate 0.18%)
Day use
Depending on dryness every 30min-4 hours
Still using

Simple Eye ointment (Yellow soft parafin B.P. 80%w/w, Liquid Parafin Ph.Eur. 10% w/w, Wool fat Ph. Eur. (Lanolin) 10% w/w )
Night use
Still using

Chloramphenicol 1%
Prescribed @ Eye Hospital for 24 hours after each mid to major rip.

Chloramphenicol 0.5% eye drops
4 times a day for 2 weeks
Prescribed after getting mislabelled drugs from the chemist.

Wiping eyes
At some point over the 2 years my eyelids stopped producing oils but this specialist has got my left eye started again. Instructions were to heat the eyes with a fine warm wet cloth and then with the top eyelid wipe in a downward stroke, and upwards on the lower eyelid. Repeat morning and night.

Omega 3, Multivitamins + boosting A, C and E in diet


Results - Eyes improved dramatically.
For the first time in a year the Simple Eye ointment enabled me to get more than 3 hours sleep The vismed felt great and provided long lasting relief. I couldn't believe the difference.
Eventually I became able to handle light without any problems and started having a life again.
Rips when they did occur became minor and there were no further major
After several months of the above treatment I was rip free for about 6 months until the injury/meds/cycling issue.


Current situation/Meds.

After the recent setbacks there were a few major rips, a few mid level and it seems to have settled into daily minor over the last few weeks. There is also renewed light sensitivity.

I'm trying some different experiments with my specialist.

I've also read on this site how humidifiers have helped some so I bought one. The reading went from low 60's to high 70's once up and running. Its made a tremendous difference. So my thanks to those who suggested it. Its one of the heat based ones. I'm based in the uk so cold dry air and central heating are serious issues.

Keeping the eye closed helps. I regularly bandage the worse eye, but end up just alternating eyes after each days exposure to light.
Wearing a bandage in bed is mixed. Sometimes if it presses on my eye it sticks firmer and rips harder. On the other hand its good to have something block out all light and keep the eye closed. Maybe trying something else in bed would work...

The new medicines to try are
- Allergan Liquifilm tears preservative free
(polyvinyl alcohol 1.4% w/v, povidone, sodium chloride, purified water, sodium chloride OR hydrochloric acid to adjust ph)

- Allergan Optive
Carboxymethylcellulose 0.5%, glycerine 0.9%, Purite (R) 0.01%


With both eyes roughly as bad as each other now I'll be using the right eye as control and left eye as the experiment.
Right eye - Vismed 2-4 hourly
Left eye - Vismed 4 hourly and Liquifilm 4 hourly (so one or the other put in every 2 hours)

This is meant to take up to 3 days for me to notice a difference. The vismed is starting to dry out for me now very quickly (been reapplying every 30 mins) so the Liquifilm is supposed to dilute it.

If I notice any difference I will switch both eyes to the way that works best.

Then the next test is with Optive.
Start using that in 1 eye for 2 weeks to see if there is a difference.

All the while continue with doxycycline and simple eye ointment at night.

If there is no improvement in 1 month then I'm to get one of my eyelids filled with botox to keep it shut for 2 months to give it a chance to heal.

If anyone can suggest any alternatives to try, or indeed anything about the intended botox procedure, it would be appreciated. As long as I can present clinical studies, and sound documentation on why something should work then my specialist is happy to experiment.

Its worth noting that he told me yesterday that there was only 1 other person who ever had eyes as problematic as mine and she cured her RCE herself by moving to a hot, humid country. Food for thought!



Ok well I've tried to be as detailed as I can should anything I've tried be of any use to anyone.

So thanks for any advice and all the best to you.

[irish eyes]

Wow.

Did the doctor advise you on Botox? I'm no expert but I think that this is less effective when you take doxycycine.

I wish I could give you some assistance on what to try next but mine has been a tortuous journey also. Your list looks amazingly familiar.

You seem to have an open minded specialist and that is a real plus.

[Rebecca Petris]

Welcome.

Sounds like you've got a lot more than RCE going on.

My recipe for RCE would be:

Clinitas Ultra 3 (similar to Dwelle, but available OTC in the UK - goes under the name FreshKote and is Rx here) or alternatively hypertonic ointment

plus

Tranquileyes goggle at night

I know an awful lot of people who have nursed their corneas back to health with this or a minor variation on this theme.

[Lucy]

Thanks for posting your comprehensive treatment plan. I'm sure people can garner lots of info to help them. I, however, would not mess with botox. But, then again, I am a Lasik/Sjogrens dry eye person. Lucy

[Tempestuous]

Hi folks,

thanks for your responses

@Irish Eyes - The specialist is great. I cant praise him highly enough - especially after all the atrocious doctors I'd seen at the Eye Hospital. It was him that mentioned the possibility of botox last week, which is the first time I've heard of it. I've done some initial googling but I only got cosmetic related results, hence my query here.

@Rebecca - more than RCE?
hypertonic ointment? I started doing some research on it and before I knew it I was getting my hypertonic, hypotonic and ginandtonics all mixed up! So I'll try again shortly.

As for Dwelle - The liquifilm I'm on just now has the same constituents but in slightly different percentages, so I'd imagine they are the same thing. I have checked out the Clinitas Ultra 3 and it does contain a preservative which I unfortunately cant deal with.

I'll ask my specialist about tranquil eyes. He has banned me from wearing eye masks - if I recall correctly - on the basis that I wouldnt clean them daily and risk infection. Which, to be fair, hes right as I normally wash them about once a week. The other issue with eye masks is that they are never still on in the morning.

I've mainly been using cotton wool pads that I tape down. However, the 2 problems with that are
1 - it still lets light through
2 - I pad underneath it with regular cotton wool to solve problem 1 but end up waking with bits of cotton wool in my eyes.

Perhaps padding it with a folded pad would be better...
Its a learning curve...

@Lucy, Hi, more negatives on the botox.... got to do some research!

[irish eyes]

Hi again

Sadly, that has been my experience also. I'm back to seeing a consultant in a private capacity again because the NHS `signed me off', saying there was nothing more they could do. Every potion, lotion & drop had proved ineffective so I was `shown the door'.

My current consultant could see for himself that I was at my wits end with the pain & discomfort and put forward the case for authologous serum. I'm very grateful to the NHS for agreeing to fund it but wonder why things had to get this far. We all need a bit of hope on the horizon don't we?

I know that Botox is used for a number of eye condtions such as spasms and strabismus (squint) so I can sort of understand how it fits into your doctor's thinking. He would of course discuss all the possible downsides. Botox as a brand isn't licensed for cosmetic use; another brand of of botulinum toxin called Vistabel has been licensed for this purpose - so it would be a slightly different product. You are still wise to research it.

[Tempestuous]

In principle the nhs is great - its just the bad doctors, politics and 'cant be bothered' attitude of the majority of doctors thats killing it.
Despite going to the Eye Hospital roughly every 3 days for a year I was never given any alternative medicines to try or advised of any other treatments.

I did some research myself and presented the results to the docs. Most lied to me but at least one admitted he didnt know - which you could at least respect.

I made enquiries about seeing a corneal specialist but the head of the group of specialists I was seeing refused. According to the nurses, there is too much internal politics for her to have referred me on.

After hearing that I went private.

I found a great doc who restored my sight and enabled me to handle daylight again. After about £1000 I found out he was one of the 2 corneal specialists at that hospital. He consults there once a fortnight. So I had to officially tell the hospital I was cured so that female doctor wouldnt complain when my corneal specialist put in a request to have me put under his control.

Thats just insane!

So in terms of level of care and finances - this way has worked out best. Worth keeping an eye out in case thats something you could try.

With the nhs - unless you push - nothing will ever happen.
I suppose it just comes down to politics and business, i.e. no need to fix it, just do a patch job and send them packing with the minimum of fuss.

I actually read another thread earlier this evening where you talk of this dominating your life and I had to do a double take as, word for word, I could have written it. So... my sympathies and I wish you all the best with this serum.

[Rebecca Petris]

@Rebecca - more than RCE?

Well, you said you were having trouble with oil production in the eyelids. That's a serious condition in its own right and it sounds like you've been on some treatment for that. Big picture wise, RCE on its own is different, and harder, than RCE with some form of dry eye. Hard sometimes to pull it apart into its constituent problems and deal with each.

hypertonic ointment? I started doing some research on it and before I knew it I was getting my hypertonic, hypotonic and ginandtonics all mixed up! So I'll try again shortly.

I am not sure hypertonic ointment is available in the UK. When I lived there, I used to get it from the US. Here it's called Muro 128 and there are generics as well. This is standard fare for RCE treatment in the US in many cases because the hypertonicity draws excess moisture out of the epithelium and helps rebond the layers of the epi.

As for Dwelle - The liquifilm I'm on just now has the same constituents but in slightly different percentages, so I'd imagine they are the same thing. I have checked out the Clinitas Ultra 3 and it does contain a preservative which I unfortunately cant deal with.

Well the preservative may be a deal killer but just a note on the other ingredients. Often with OTC products it's what's NOT on the label that is key to the differences. With Dr. Holly's drops it's not the PVA and povidone per se but the high oncotic pressure achieved with the blending of particular grades of the PVAs that no other drop uses. So there may be PVA and/or povidone drops out there that are fine as simple everyday lubricants for dry eye but don't perform the same function as the oncotic drops. - Part of the idea is similar to what Muro 128 does actually. You might see if you can get some Muro maybe mailordered from the US if your doc agrees.

One question for you though:

Has no doctor ever recommended debridement? That's usually the treatment recommendation over here with a really stubborn RCE case that can't be managed satisfactorily with the usual fare. Not that I'm a fan (I don't like invasive stuff in general) but it's the fallback when daily management doesn't work. I just went back and read your description of the pain and duration of your erosions and geez, if it were me, I'd probably be begging for debridement.

[Tempestuous]

Thanks Rebecca,

I really appreciate the info.

I hate the thought of invasive procedures also, but by the end of the first year I was ready to tear my own eyes out from the pain. Fortunately I'm only experiencing minor variety of rips now (with a host of other issues) so I'm in a completely different situation.

Something I just remembered is that I have microcysts in my eyes which apparently cause the underlying weakness. I dont know if this is just me or is what causes RCE in general. However, I have had rips which I understand have removed everything but they just come back.

When I had the bandage contact lens that ripped a large chunk out of my eye, they used cotton buds to debride the area further and remove the ragged edges and any lose flaps.

Not exactly your standard alcohol debridement procedures tho'.

I've also remembered
- my eyes bulged out into a conical shape. Cant remember what caused it but the specialist sorted that out.
- my eyes were very red. i.e from 1 yard away my eyes simply looked like pools of blood. Again this specialist has sorted that out.

Cant thank my current specialist enough really, looking back at where I used to be under the other nhs eye 'specialists' care.

Worth noting that I used to have good eyesight. I never wore glasses/contacts and could read the bottom line of eye charts. Since this I've dropped from the 11th line down to around the 4th line. Hopefully I'll get my eyesight back someday.

[Rebecca Petris]

- my eyes bulged out into a conical shape.

Do you have keratoconus? (Just wondering about your vision...)

[Tempestuous]

No.
My eyesight was deteriorating last year and the specialist explained that it was a result of my eye bulging out at the front and that it would settle down - which it did.
The current loss of vision is from poor tear film and damage.

[irish eyes]

.

With the nhs - unless you push - nothing will ever happen.
I suppose it just comes down to politics and business, i.e. no need to fix it, just do a patch job and send them packing with the minimum of fuss.

I actually read another thread earlier this evening where you talk of this dominating your life and I had to do a double take as, word for word, I could have written it. So... my sympathies and I wish you all the best with this serum.

Hi again

I agree, you have to push with the NHS and at times it has tested my sanity. What do people do who have few or no resources? Do they just languish and suffer? If I felt better, I'd be a spokesperson on their behalf.

Yes, I'm afraid it has dominated my life despite making supreme efforts for it not to. I never quite made the adjustment to all this disruption although I've had years to get used to it.

I'm almost too frightened to get my hopes up about the serum. I already have a wish list - and one of my targets is to read a book with a few hundred pages and actually reach the last page! I SO envy people who can do that. And being able to sleep better - bliss!

[Tempestuous]

@ Irish Eyes - I hope the serum is helping...

I just wanted to give an update on some of the medicines I've been testing recently.
I've had great results with a product called Optive.

For the detail....
I have rce, ebmd, dry eye syndrome & Meibomian gland dysfunction.
The past medicines and new drugs tested are outlined in my previous post.

The results are
1 - Liquifilm tears applied 4 hourly and 2 hours post application of Vismed 0.18%, have proven effective at stopping the vismed from drying out.

2 - Optive. This has been simply unbelievable. I was told it would take 2-3 weeks for there to be any noticeable difference. However, Upon the first application it immediately felt silky smooth and provided long lasting relief.
Keep in mind I have problems with both eyes and applied the optive to my (marginally) worse eye, leaving the other without as a control.
The optive was applied to the right eye in addition to the Vismed and Liquifilm.

Since starting Optive 17 days ago, I have had 5 rips in the Left eye and 2 in the right. Both instances of the latter being on days when both eyes ripped. In the preceding 11 days I had 5 rips in each eye.

I have just had my exam by the specialist today. He found that the damage pattern within the layers of the right eye have healed up.

So I'm somewhat overwhelmed by this news. Not only is it able to soothe the eyes far better than anything I have tried and for far longer, but its healed the damaged cells within the eye that have been there the last couple of years.

Dont get me wrong, I'm by no means 'cured'. My eyes are both still ripping, I'm sensitive to any light, my vision is still messed up and I'm regularly in pain and discomfort.
But in 2 weeks to have
- less pain
- fewer rips
- long lasting (4+ hours) relief from grittiness/dryness
- a significantly healed eye when viewed under the slit lamp microscope
- and have my bad eye become my good eye
is a very good step in the right direction in my book!

Now just because this is the most significant med I've tried, please dont anyone just go out and buy it without checking with your specialist first if its right for your eyes and wont adversely affect them. For instance, I mentioned muro to my specialist today which seems to be a common standard for RCE and he said it would be bad for my eyes. Not only that but from all I've read on this board its very much a case of keep on trying things until you find something that works, as what works for one person may not work for another.


One question I do have though is, do eyes build up a resistance to the medication over time? Or is it a case where your eyes change and what was once an effective treatment becomes less so?
Its just that Vismed was very good to me for a year, but now it just dries out too quickly.


Anyway, good luck everyone! Hopefully theres something out there that will help you too.

[liz56]

Hi,

Thanks for your update. I'm so glad to know that you are healing and that you are getting a better night's sleep. That makes a huge difference. It is devastating to feel like we have to choose between pain or sleep. We all need and deserve to sleep without pain, and that is what makes RCE's so frustrating. I'm glad that the year that I reviewed helped. It was very therapeutic to me to keep track of everything, especially while it was happening. (I kept a spreadsheet so that I could track what worked and what did not.)

I pulled this question from another thread: "One question I do have though is, do eyes build up a resistance to the medication over time? Or is it a case where your eyes change and what was once an effective treatment becomes less so?"

I think it depends on the medication. Doctors seem to want to use steroids (oral pills and eye drops) for a limited amount of time. However, OTC eye drops without harmful preservatives are something that I have found work for two and a half years now.

If things go for you like they do for me, you'll see you RCE's eventually end. I still have issues with pain, sticking (in fact, I needed my bedside drops to help me to open my eyes this morning), and visual acuity, due to the combination of dry eye and EBMD, but it is manageable, especially with Dwelle having come back.

Thanks, again, for the good news.

--Liz

[ringo]

Hi,

Just wanted to say that my recurrent erosions also healed on a regimen of doxycycline and steroid drops plus hypertonic ointment at night. The doctor told me that this course of treatment keeps them at bay and they may never recur, but it is wise to keep taking the doxycycline.

I feel for you with all my heart, i know the pain you are describing and the sleepless nights... Just a thought-- do you have access to a compunding pharmacy? may be they can compound for you cyclosporine ointment at night. Please consult your doctor....this treatment takes very good care of erosions and even ulcers in the dry eye.

I wish you a successful complete healing! God bless you...