introducing myself! ocular rosacea...any advice?!

[IrishEyes1992]

Hey guys,

so im a first time poster but long time lurker on the forum! I'm 24 years old from Northern Ireland and still at university.

I'll give u a brief background to my situation.....I guess my eyes were always sensitive, late nights as a teenager resulted in styes and I always had a lot of mucus on my eyeballs.....they didn't feel dry tho.

fast forward to age 19 and I moved into my university halls of residence and developed dry eyes....this was easily managed tho with drops twice a day and a bowl of water above the radiator to help add moisture to the air.....every once in a while I would get sticky eyes and use infected eye drops for a day....but I was able to wear lots of eye makeup, false lashes etc and often slept in my eye makeup at uni (not wise I know lol) but it really was very manageable at that stage. Air con on the plane gave me a sore eye tho.


anyway...age 21 I took the mumps virus, my eyes didn't get any drier afterwards but I developed other issues such as bladder infections which resulted in very high doses of antibiotics, needless to say my stomach was a mess. At this point when my stomach was a mess I developed acne Vulgaris and rosacea, my skin had always been perfect before. This resulted in eyelid cysts and styes.....my eyes were pure white tho and doxycycline 100mg really helped me, I would just get a sore eyelid at times. Problem solved (or so I thought)


i had been on doxycycline for 9months and was still taking it and my eyes became so dry the week of xmas. I developed a lot red veins on the surface of my eye. They are very gritty, stingy, itchy and just feel so dry...tried warm compresses and thearatears fish oil etc...to no avail....I will admit that my diet is awful....I also have interstitial cystitis (inflammation of the bladder) so its been an horrendous few years....I have turned to food for comfort and basically eat pure sugar....I eat sugary cereal, bread and cheese, pancakes and jam, cheesy pastas, chinese takeaways, Mcdonalds and so much biscuits, buns, cakes and sweets (candies)...no wonder I have issues. Fruit and veg never pass my lips...I know myself i REALLY need to change my diet.

Anyway, I currently have the dissolving plugs in my upper ducts and have had them for three months with no improvement. I have been given steroid drops but I'm afraid to use them because of the rebound redness issue....I have purchased cliradex wipes but again I haven't used them yet....im attending a naturopath in order to get advice on diet and vitamins etc. Wearing my moisture chambers as i type this but not noticing less dryness...i have never tried them out in an air conditioned environment though.


was in uni yesterday and my eyes looked so bloodshot in the toilet mirrors, then i get into my car five minutes later and my eyes look white, with pink veins on the surface but not as bloodshot as in the lighting in uni...so weird.

Any advice anyone can give me would be so much appreciated. Has anyone in the UK been able to get restasis...can you buy it online?! I see my ophthalmologist privately but but prescriptions in Northern ireland are all free under the NHS so I think they only very rarely prescribe cyclosporin because it costs the health service money....same with serum tears....I would consider buying restasis online.


Please someone tell me that the redness can get better/diminish. Sometimes my eyes aren't as red as other times depending on how dry they feel. I really need hope that the redness can be improved upon. And how can i avoid rebound redness with steroids?!

Would love to hear back from people
Thanks,
Amy

[Dryeyekami]

Hello and welcome! I too am a newbie from across the smaller pond in the UK. Sounds like you've had a terrible time of it....

I'm currently taking steroid drops for s short course of two weeks. Redness went after day 2.... They really are useful in controlling inflammation.

Do you have a lipid deficiency? Plugs suggest aqueous?

Kami

[MGD1701]

Hi Amy
Sorry to hear about it. Dry eye is very complicated as there are many causes so you must identify them first so you can find effective/right solutions. Otherwise only get worse - if you have MGD, like me, some glands could be gone for good (= you can not get them back), if you dont take care of them sooner.

Maybe start with your diet, use cliradex wipes etc. I am of the view that all medication has side effects, it may cure one thing but....Good luck!

[PhoenixEyes]

Hi, welcome, sorry to hear you're suffering.

At this point when my stomach was a mess I developed acne Vulgaris and rosacea, my skin had always been perfect before.

Do you still have skin problems? If so hopefully you are seeing a dermatologist. I found antimicrobial Dermol lotion helped my atopic eczema but everyone is different.

Hopefully you're also seeing someone for the stomach and bladder issues. I guess you;ve already tried probiotics?

http://www.nhs.uk/Conditions/probiot...roduction.aspx

i had been on doxycycline for 9months and was still taking it and my eyes became so dry the week of xmas. I developed a lot red veins on the surface of my eye. They are very gritty, stingy, itchy and just feel so dry...tried warm compresses and thearatears fish oil etc...to no avail....

Could it be possible that your body built up a resistance to the doxycycline after being on it so long? You should speak to an ophthalmologist about this possibility and if there are any alternatives. There are topical antibiotic eye drops you can get such as chloramphenicol and levofloxacin. Do give the Cliradex a go since it seems tea tree oil may have antibacterial benefits.

Maybe discuss with your ophthalmologist about the root cause of the bacteria / infection that is requiring such long term use of antibiotics and how you might combat it at the root, e.g. any other fields of medicine they can refer you to such as immunology.

was in uni yesterday and my eyes looked so bloodshot in the toilet mirrors, then i get into my car five minutes later and my eyes look white, with pink veins on the surface but not as bloodshot as in the lighting in uni...so weird.

Perhaps your eyes are more sensitive to fluorescent lights at Uni? Could look into some protective eyewear that blocks out some of the fluorescent lighting. Perhaps you can find ones that don't require dimmed / tinted lens.

Any advice anyone can give me would be so much appreciated. Has anyone in the UK been able to get restasis...can you buy it online?! I see my ophthalmologist privately but but prescriptions in Northern ireland are all free under the NHS so I think they only very rarely prescribe cyclosporin because it costs the health service money....same with serum tears....I would consider buying restasis online.

Cyclosporin has the brand name Ikervis in the UK. It has a different more concentrated formulation that allows for once a day usage rather than twice a day.

https://theophthalmologist.com/filea...5-802-fig2.png

However I wouldn't jump to using cyclosporin as you seem to say your biggest woes began with an infection and that antibiotics helped. Cyclosproin works by supressing the immune system so there's a higher chance of infection.

Hope you find relief soon.

[IrishEyes1992]

Thanks for your replies!

Kami....I might give the steroids a go....which one are you taking. I was told that I have ocular rosacea/MGD by my opthamologist....and my eye issues began at the exact same time I developed skin problems....but then when I was last at my opthamologist he said that he couldn't be sure that I wouldn't develop ATD and couldn't say for sure....he's an idiot and I'm changing consultants.

He gave me plugs because he said that the theory is with MGD if it saves more tears then the effects of evaporation won't be as bad....I know someone else with ocular rosacea that he have plugs to....they haven't worked for me tho

hi MGD1701....thanks for your reply! I know the causes of dry eye do indeed seem to confusing...it's really worrying me trying to figure it out.....I need to do something about my diet!! Good luck to you too!! What has helped you so far?!

Hi PhoenixEyes....thanks for your reply! My skin is a good bit better....doxycycline made it better. I use free derm antibiotic gel on the areas that I get bacterial acne....I have some broken veins and redness from rosacea around my nose which i cover up with makeup and I get some rosacea pimples that come and go which i use polyfax ointment on. Its strange my skin problems only developed when my stomach was so bad yet more antibiotics made my skin better.

Yes I am being treated by a urologist for my IC but its a very hard thing to treat...I actually take probiotics...called biokult from amazon and my stomach got a good bit better ( touch wood) yet this didn't stop my eyes getting worse

the bad eye issues all started with the meiboimian cysts and styes so my oil glands are definitely blocked but yeh the antibiotic drops could be an option for me.,thanks for that ill look into it! thats a good idea ...i was actually considering going to immunology because i also have issues with sinuses....there is deffo something going on with my body lol....

protective eyewear again sounds like a good idea...i would consider the tinted lenses if it made me more comfortable!

Do you know if its extremely difficult to get Ikervis here?! i have heard that it is.....

enough about me lol....I hope you manage to come across something to help you....really great of you to send me all these links...

Thanks all of you for your replies and i hope you get to a point where you are at least comfortable!

Amy

[MGD1701]

Hi Amy
If you have rosacea/MGD, IPL helps, from what I have read, not sure if it is available in Europe.
Some acne drugs could cause MGD. You do know smoke is bad for dry eye (and skin)?
Vit. D & A: perhaps it is good to do blood tests for these two.

[PhoenixEyes]

protective eyewear again sounds like a good idea...i would consider the tinted lenses if it made me more comfortable!

Could start off with some cheap wraparound sunglasses to see if the wind and light protection is of any help. If it helps you could then look into tinted moisture chamber glasses. This site were good about letting me try a couple and sending back for a refund.

Do you know if its extremely difficult to get Ikervis here?! i have heard that it is.....

They're not as keen to prescribe it in this country, but that might be over safety concerns since it's somewhat new here and an immunosupressant, so they like to try other things first. I had already tried artificial tears, lubricant gels, steroids, topical antibiotics, plugs, etc. before Ikervis.

Hopefully you can get a referral to immunology to get to the root of the problem. If you do get to see an immunologist you could discuss with them too about if they think an immunosuppressant like cyclosporin / Ikervis would be contraindicated or not in your case.

Best of luck, hope you find an answer soon.

Vit. D .A- perhaps good to do blood tests for these two.

I once got an affordable Vitamin D test offered by an NHS lab via post here (they also offer their service abroad if anyone is outside the UK and interested): http://www.vitamindtest.org.uk/

[IrishEyes1992]

Hi phoenix eyes...sorry for my late reply. I actually have moisture chambers from that very website....Im wearing them as we speak lol...I haven't noticed any difference yet...but they must be pretty tight because they do steam up a bit lol....I deffo would consider getting the tinted lenses tho so I'm going to ring them about that.

yeh they seem really weird about prescribing ikervis....doesnt seem to be that big of a deal in other countries tho! i would love to try it....im going to go to another ophthalmologist and see what they say. I hope your getting on well with it...


Thanks for the link for the vitamin d test...ive been low in it before so its perhaps something I need to do again.

[farmgirl]

Apart from the fact that if you want to improve you need to start with diet, I have two comments to make.
1- the dissolvable plugs are gone in 5 days to 3 months so if they are not working they are probably not there. The uppers did nothing for me but having all 4 plugged did so maybe try all 4.
2-The redness in the bathroom mirror is usually from the florescent lighting.

[IrishEyes1992]

hi Farmgirl....thank u for your reply. yeh I know my diet is a mess...ive been using food as an emotional crutch which really isn't good! Do you find low sugar to be good?

Yeh I was going to go to another ophthalmologist and ask him for 4 plugs rather than just the uppers....do you have permanent plugs?

yeh its always the lighting in lifts, hospitals and my university toilets that make my eyes look awful

what is ur diagnosis ATD or MGD?

[farmgirl]

I have Sjogrens compounding the problem of a weak blink. I eventually had the uppers cauterized and the lowers have removable plugs.

As regards the sugars, what I have found is that the less you eat, the less you want. I am to the point now that I cannot tolerate much sugar at all, like I couldn't eat a chocolate bar. I only put half or less sugar in any recipe calling for sugar and that is plenty. I am not sure it specifically helps the dry eye but for sure I stay healthy cause sugar is the root of all evil in the disease process......research it. Besides that it just makes you fat which will create another whole host of problems. Have you tried meditation to help with the emotional aspect of life. There are books and classes galore on how to meditate effectively.

[MGD1701]

Indeed sugar is bad for health/skin, even natural brown sugar.
I use 'honey' with coffee, not sure if it is still bad?? I dont like sweets - cakes always too sweet for me.

[IrishEyes1992]

farmgirl- thanks for your reply!! ahh i see...i have interstitial cystitis which is actually associated with sjorgrens...so I'm going to go to someone else and see whether I could have ATD as well as MGD.


yeh i guess thats true ...because the more i eat the more i want...so i really just need to go cold turkey and cut it all out. i was hoping that it would help dry eye or more specifically reduce the inflammation in my body and therefore reduce dry eye.

yeh I've heard of meditation but haven't given it a chance. i really need something to relax me...

...i notice your from canada....i used to go there all the time...its where i always loved to spend my summers....i haven't been since this whole dry eye fiasco tho...so how do your dry eyes hold up in the canadian climate in the summer? I'm afraid ill never be back there

MGD1701- I've just started attending a naturopath who told me that its best to avoid honey as even tho it has some healthy properties it is 99% sugar ...he said 1/2 a teaspoon now and again is okay if blood sugar levels are fairly stable on that day ( whatever that means) there was me thinking it was healthy lol.....

[farmgirl]

Sweet is sweet but compared to white refined honey is a healthy alternative.

Meditation is awesome, it is like sleeping but being awake, you really don't want to come back to earth...try it. I spend winters in Panama so the air is really moist but still I have problems because there is always a fan or AC going so it is a trade off. I just came back to Canada and yes the dry air in Calgary is a challenge definitely, summer is better.

I don't recommend cold turkeying off the sugar, just use common sense and avoid it if possible but don't deny yourself any. You will find in time that you lose your appetite for it. Don't forget that it is hidden in a lot of things like ketchup and peanut butter for example...learn to read labels. Fructose corn syrup is the worst enemy and it is in everything. I try to scratch cook/bake as much as possible that way I can control the sugar content. A little sugar is not necessarily bad for you it is just that we so overdo it, no to mention that is destroys your teeth and makes you overweight.

[IrishEyes1992]

Yeh true....I always thought honey was pretty healthy but my naturopath is being very strict about sugar.

I am definatley going to try meditation! I need to just disconnect from all my consuming thoughts about dry eye. I get very anxious about the future!

So your a snowbird!.....my Canadian relatives always leave Canada in the winter but they go to Arizona.....too dry for me lol

I've never been to Calgary....I always go to Toronto to stay with family....my hair goes frizzy in Toronto in the summer so I guess there is moisture in the air, I would just worry about how my eyes hold up!

yeh your so right, I think sugar can make you put on weight even easier than fat can! I just need a healthier lifestyle overall!