Ocular Rosacea - please, only success stories!

[Declanium]

Hi
I'm new here and kind of just hanging on to sanity by a thin thread. I was diagnosed with blepharitis July 21, and told it was not a big deal. Do warm compresses and lid scrubs. "You'll be fine.."
Well, I wasn't. Treatment wasn't working.
Second opinion. Opthalmologist says, "oh, yes, your glands are not releasing quality oil. It's ocular rosacea. Because I see you have rosacea on your face..."
I wasn't even aware I had rosacea, and I go to the dermatologist every year like clockwork for a mole check.
So I make an appointment with a dermatologist-
Yup, it's rosacea. I'm on 40 mg doxy, Finacea foam 2x day...and she tells me I will be pleased.
Will I?
I'm reading all of these horror stories on these forums. People with eyes so dry that they are contemplating suicide.
I have two small boys to raise. And I just need to hear a good story. Please.
Maybe you had ocular rosacea, and it got better.
Please. I need hope not horror. 😔

[Keely]

Well, I can't give you a good ocular rosacea story, but I had blepharitis some years ago now, and despite it being at stage 4 (lashes turned inwards) I recovered with no ill effects. The condition I'm on here for now was triggered by a traumatic eye injury so unrelated.

I noticed some redness on the eyelid one morning and over the next couple of days it progressed incredibly quickly. Despite washing it and being careful, in a couple of days the skin was red, tight and swollen to the point where I woke up to find I couldn't close my eye, but I couldn't open it either. There was just this slit of eye visible between the lids and the lashes there pointing the wrong way - the few I could see were crossed like a venus flytrap's fronds. I headed straight for the doctor and camped on the doorstep until they opened.

The doctor prescribed antibiotics, a gel that was normally smeared under the now-unmoveable lower lid, and instead told me to smear it across the opening and then try to move the eyeball to get it under the lids, as well as drops to be used similarly until I could actually get it in properly. They also suggested not using soap to clean it, just a cottonpad and water so nothing could aggravate it. I thought when she signed me off for three days she was being optimistic, but by the end of the day I could move it a bit, and the swelling was going down. By three days the eye was usuable, just not pretty. My manager, looking a bit pale, asked if I wanted more time off or if I could wear sunglasses in the office as it was putting people off work! By four weeks there was just some redness visible on the lid edges, and by six it had gone down completely with no damage to the eye.

I still keep my lashes clean and pull anything that looks like it might start growing inwards (fun, now I have a bandage lens in!) but otherwise there hasn't been any recurrance, so recovery is possible.

[Declanium]

Thanks for replying, keely

[PaulineD]

Hi,
I have severe dry eye from (not obvious) ocular rosacea. I can't say they are better, but, thanks to scleral lens, my life is just normal.

[Karlie1]

Hi Declanium,
I, like a lot on this forum was in the same situation as you are now, about a year ago.(excruciating burning eye sensation) I too have Rosacea and "perhaps" also Occular Rosacea. I have been to numerous specialists but always remember my first appointment at an eye clinic in a town not far from my home. The doctor said 1.what you have is for life. 2.learn to live with it. 3.over the next weeks and months and maybe years your brain, will learn to adapt(same as patients with hip problem).
I work abroad a lot so visited several eye specialists and clinics in Belgium and France as well as UK and I got the feeling they are all just guessing and when you read this forum I am not the only one thinking this way. I even got referred to a psychiatrist(urgently) when I said (jokingly, (some doctors have no sense of humour :-)) that I felt like jumping from a local bridge. But I WAS very close to the edge as you appear to be too.
Well 1 year on and yes the brain appears to be starting to ignore the burning sensation, or has the burning eased? I had IPL done twice on my face(I had read this can help) and holding IPL on my eye lids as a "last resort". After trying various creams, lotions, sprays, tablets, restasis, compresses etc etc, threw them all into bin.
Apart from 2-3 times a day normal eye drops and plenty of exercise( I don't mean marathons or weightlifting) and at work I fill a beaker with clean cold water and just dab with cotton bud(clean/cool) my lids every couple of hours, I feel a lot better than a year ago. Bearable is the word I would use. maybe there will never be a real cure
but as it is now, I could go to the end of my days.
Karlie1

[Declanium]

Wow. Maybe I will find that bridge.

[Klee]

Main thing is keep up the cleanliness routine. Dont skip a night. Hope you feel better soon.

[PG]

Yes, I have severe meibomian gland dysfunction caused by ocular rosacea. I am doing well, and started out quite badly. That was late last year.

My starting point was ongoing red eyes, bright pink lid margins, warm compresses resulting in sticky oil only, 20+ artificial drops a day, and probably another 5 at night (waking up that many times due to eye discomfort), eye discomfort, irritation, and dryness constantly but especially at work on the computer in an air conditioned building. Had to start working from home half the time.

I modified the recommended treatment plan. It wasn't working. Happy to share, but I'm guessing this differs for everyone.

Now I get oil with almost every warm compress, only have red eyes after working on the computer for hours, lid margin pinkness reduced by at least 50%, need to use artificial tears 2x a day and 2x a night, eye discomfort almost gone except for the night waking or 4+ hrs on the computer with no break, and no pain. I don't constantly think about my eyes anymore. Feeling more normal, and work from the office most of the time now.

[PG]

Here is a success story: http://www.dryeyezone.com/talk/forum...y-happy-ending

[nori2015]

[QUOTE=PG;n202446]

I modified the recommended treatment plan. It wasn't working. Happy to share, but I'm guessing this differs for everyone.

.[/QUOTE

id love to hear about your treatment plan please

[PG]

Sure, I don't know exactly what helped but this is what I do -

-Warm compress 3x day for 10 min instead of 2x day for 4 min. Rice bag heated in plastic bag and two cotton squares run under hot water, instead of a warm wash cloth.
-Massage from eyebrow down to eyelash, instead of inner eye to outer eye along lash line.
-Switched from Refresh plain vials to Baush & Lomb Soothe vials (must have tried 15 or so)
-Restasis 2x day

These are my additions, not changes from what the doctor recommended:
-60 oz of water daily
-One tsp Carlson Norwegian fish oil + two Nordic Naturals Ultimate Omega pills daily
-Stopped drinking alcohol (instant rosacea trigger for me)
-Systane lid wipe 1x day, run along the lid margin
-For the work environment, I take a break mid day to do the compress (except this one is dry since I have makeup on) and go to the gym. Exercise clears my eyes always, and makes them feel better. Wear 7eye Ziena Neureus glasses with a computer prescription while working on the computer. I turn on www.protectyourvision.org for the eye break reminder. I installed i.flux for the automatic birghtness adjustment.
-7eye Churuda sunglasses when outside

My eyes only feel good when I do these things. If I skip, down the hill I slide. I do feel pretty normal now, and I really did not feel at all normal for 7 months. Now you can't tell that I have this chronic condition just by looking at me unless you know something about it.

Up next:
-I have an IPL treatment scheduled.
-I ordered Cliradex wipes because I just read that you cannot see demodex with a slit lap, only with a microscope.

[PG]

Declanium, I have been using the Cliradex wipes for four weeks now and have seen more improvement. The skin that was always pink and a bumpy texture is 80% better. The texture is now smooth and the pinkness is very faded. And my eyes don't bother me much at night anymore.

I am trying Cliradex because I read a theory that rosacea is caused by demodex. They introduce bacteria. I also read that they can damage your meibomian glands. No doctor ever told me that I have demodex, or even brought it up. From Review of Optometry: "Demodex brevis mechanically blocks meibomian gland orifices, leading to insufficient tear lipid secretion, which can be an inflammatory trigger for dry eye."

[PG]

Declanium, I am beginning to think that my ocular rosacea may be caused partially by demodex. I have had a lot of improvement of the skin around my eyes after using Cliradex and am getting E-IPL treatments. I am hoping the IPL clears out the glands, and they can improve. I read that demodex feed on the glandular epithelial cells causing direct damage to the lid margin.

From a study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2946818/ --
The mechanical blockage and the delayed host immune hypersensitive reaction can result in the severe lid margin inflammation. Our previous study has already shown that there is a close correlation between facial rosacea and lid margin inflammation.

[josepht3]

PG,

Has cliradex helped with eyelid redness? How long did it take for you to see results?

I've had eyelid redness for the past few months and have tried pretty much everything. Tried cliradex for about 10 days and stopped because of slight irritation. But i'm not even sure I can attribute that to the cliradex. Now I'm starting it again and going to try to give it a month.

Do you use eyelid cleansers at all? I just ordered ocusoft oust for demodex

[PG]

josepht3, yes the cliradex helped with eyelid redness. Nothing amazing, but solid progress. My eyes definitely feel better. My redness is only on the lid margins, where the meibomian glands are. I don't have any blepharitis. After using the Cliradex on your eyes, you can fan your closed eyes for a minute to dry it out. There is a video on their website. I saw results in a month, and I am going to treat for 90 days. Demodex have a lifecycle which I think is 10 to 14 days and then new eggs hatch. They are persistent. I use Systane lid wipes any time I wake up at night because demodex only come out at night. As I understand, the bodies leave behind bacteria when they die which can make things temporarily worse. The skin just above my eyebrows where I have rosacea is improving faster than my eyes.