Ocular rosacea?

[Cabut]

I've been just diagnosed with ocular rosacea although I'm not very sure I have it.
Let me explain. For over two years I've been seeing a very well thought of eye surgeon in Tucson. When I saw him about 6 months ago he gave me a blephamide saying that he thought I had blepharitis. I tried it and it made my eyes worse. I did nothing and they felt better on their own in time. Then,the area above my eyelids as well as the lids started swelling in the morning and I thought I would see a dermatologist. I told him my history and he said he thought I might have rosacea! (no red patches on face)
He prescribed doxycycline first (couldn't tolerate it.) then erythromycin (could not tolerate it either.)
I then went back to my eye surgeon and told him about my rosacea diagnosis by the derm. He examines me for what seemed like 5 seconds and concurs with the dermatologist! This is after 2 yrs of being treated for everything from dry eye to blepharitis by this eye surgeon.. I tell him about the drugs I couldn't tolerate and he prescribes erythromycin eye ointment 1%.

My eyelids are red and swollen,more on the top than the bottom and are so sensitive right now I don't think I could tolerate it.

To those in the know:
Any ideas? This is driving me crazy!

[Shell]

Can't help much but

I can tell you that you don't have to exhibit facial rosacea to have ocular rosacea.

It may be ocular rosacea if your eyes feel worse when you go from a hot to cold environment or vice versa, if they flare up after eating spicy foods or foods containing a lot of histamine (you can do a google search for these) or after drinking alcohol. I find a high sugar/ high naughty carb (white bread, white rice, white pasta, cakes, pastries etc) affect my rosacea.

Do you use other skincare around your eyes? Might be worth changing what you cleanse them with or use just warm salted water (and cold compresses after, just cotton balls dipped in cold water, wrung out a little and left on eyes for a 30 seconds, repeat a few times)... See if this makes a difference. Also, if you use hair care products, sunscreen (that kills my eyes even if I don't go right up to the eye socket, the worst offenders being those containing chemical sun filters like oxybenzone). You could also try changing your detergent and see if that makes a difference. Also, if you have goose down/ duck down filled pillows it's worth getting new pillows... It could be that. I guess it's about being vigilant and investigating...

I take fish oil (some like flaxseed oil but I'm sure it makes me itchy!) by mouth to help combat dryness from the inside. I like Ascenta HP but Carlson's and Nordic Naturals are good. Maybe ask here first so you can get others' feedback and make an informed choice. I was reading recently that grapeseed extract or pycnogenol (the latter being more expensive) can help ocular rosacea but ask your doctor first...

Hope this helps a little... Take care, Shell

[Cabut]

Thanks very much!
Do you use Desonide or any other eyelid creams during a flare-up?

[LaDiva]

Hi Cabut,
I have ocular rosacea, and facial rosacea, but you can have one without the other. I also have rosacea on my eyelids. The dermatologist gave me Doxy and a topical steroid to use sparingly on the lids. Both have made a big difference. Sorry you cannot use Doxy. Compresses which are too hot quickly make the eyelid problem much worse. I also change my pillow cover and pillow slips regularly. This seems to help everything neck level and above! (Scalp, face, eyes.) Good luck to you.

[MaryVa61]

Interesting discussion. I have a bit of Rosacea (telangiectasias and papules, not postules or acne) due to facial flushing and permanent red spots at the edge of a lower lid, but docs don't think I have ocular rosacea. I'm not completely convinced.

My eyes are very sensitive to chemicals and I especially have to be careful about what is in my detergents, shampoos, sunscreens/lotions and even the finishing chemicals used on my pillowcases. I shop for chemical-free bedding, at "green" or organic type online shops. And I'm allergic to formaldehyde-releasing chemicals (Q-15, DSDM Hydantoin, imidiazolidinyl urea, bronopol, etc.) in all those things. I've recently discovered it also helps my eyes if I use sulfate-free shampoo, like in L'Oreal's new line.

I also just learned from a doctor that Omega 3 and 6 may be triggers for me for episodes of a rare disorder I have that causes flushing and pain in my feet, hands and ears (erythromelalgia), so I'm going to experiment with going off those to see if my EM and Rosacea get better without my eyes getting worse. Fish oil is a vasodilator, so it may be the culprit. Maybe my eyes will even get better since I have had a lot of facial flushing since going on Omegas. I know the Omegas initially made my eyes less dry though, so it's confusing as to what to do. Will just have to experiment and see how it affects my eyes. What the doc said is basically that any supplements that are good for the heart likely cause some vasodilation, which isn't a good thing for Rosacea or EM.

BTW - Shell- all those triggers for Rosacea you mention are also triggers for my EM, because of vasodilation, except I'm not sure about the sugar yet. Still testing high histamine foods on myself. I also need a cool bedroom. A warm environment is a definite trigger.

Mary

[Cabut]

Thanks everyone. I guess I'll have to treat this as if it was ocular rosacea since after spending a bit of time on the web, I certainly have all the hallmarks.
I have decided to try to take 50 mg. of doxy a day and erythromyicin eye ointment 1% cream at night as well as desonide .05% as needed during the day.
My lids top and bottom are very red swollen and gritty and my eyes are bloodshot and hurt.. What works best for relief? This is scary!

[LindaLa]

I also have facial rosacea and ocular rosacea. My dermatologist has been great trying to get things under control. I think she believes that if the facial rosacea gets under control, I may have more success with the ocular rosacea. I have been on doxycycline (various mg.). Right now I am taking 150mg once a day, I am also using Metrogel in the morning and and aczone at night. I also use Cetaphil for washing my face. My facial rosacea is not too bad, however, my ocular rosacea is really bad. My eyelids are always red. My PCP calls them "angry". I have lost a lot of eyelashes due to the blepharitis. I have not worn eye make-up in over a year. I have upper and lower plugs and am on month 3 of restasis. My doctor says I may not get relief from the restasis for several more months. I use hot compresses twice a day. I don't know if they are the best thing to do, but my eyes definitely feel better when I do it. I take fish oil and thera tear supplements. I am drinking coconut water. For eye drops through out the day I use TheraTear and Genteal gel. The Genteal has worked the best for me. I will be making an appt. with the allergist soon as I am beginning to wonder if some of my discomfort is due to allergies. Right now I am still searching for a solution. After reading this forum I have come to the conclusion that there is no one treatment and that what works for one person, doesn't always work for another. I will keep trying until I find a way to feel better. Good Luck!

[LindaLa]

I also have facial rosacea and ocular rosacea. My dermatologist has been great trying to get things under control. I think she believes that if the facial rosacea gets under control, I may have more success with the ocular rosacea. I have been on doxycycline (various mg.). Right now I am taking 150mg once a day, I am also using Metrogel in the morning and and aczone at night. I also use Cetaphil for washing my face. My facial rosacea is not too bad, however, my ocular rosacea is really bad. My eyelids are always red. My PCP calls them "angry". I have lost a lot of eyelashes due to the blepharitis. I have not worn eye make-up in over a year. I have upper and lower plugs and am on month 3 of restasis. My doctor says I may not get relief from the restasis for several more months. I use hot compresses twice a day. I don't know if they are the best thing to do, but my eyes definitely feel better when I do it. I take fish oil and thera tear supplements. I am drinking coconut water. For eye drops through out the day I use TheraTear and Genteal gel. The Genteal has worked the best for me. I will be making an appt. with the allergist soon as I am beginning to wonder if some of my discomfort is due to allergies. Right now I am still searching for a solution. After reading this forum I have come to the conclusion that there is no one treatment and that what works for one person, doesn't always work for another. I will keep trying until I find a way to feel better. Good Luck!

[Cabut]

Thanks for your post Linda. I was taking erythomyicin eye ointment for a few days but I stopped it last night and my eyes feel better. I'm going to stick with the doxy 50mg. a day for awhile. I've been to the allergist and I'm allergic to a number of things both inside and outside the house. I am getting shots. I'll try the coconut water, it is very dry here in AZ. I think you are right about there being no one solution. Some say no hot compresses ,use cold. Who knows! I am taking motrin for the lid swelling. Any cream seem to irritate by lids after a short while. I've tried just about every recommended ointment, drop or cream. For me nothing seems to work best!
Very difficult condition. Oh, I have no rosacea at all on my face-go figure!

[littlemermaid]

Cabut, It seems you're trying all the right things. At the moment the docs are calling rosacea 'hypersensitivity', which is why we get this derm/ophth confusing terminology scenario, so it's good to consider the bases of the different prescription drops and ointments (eyelid swelling is allergy, I think). Good luck clearing the MGs. We are pumping better oils with fish oil supplements and minimum animal and processed fats, lid hygiene, antibacterial drops in pulse therapy. LM would be on doxy but can't use oral meds.

(On facial rosacea with seb derm, I'm still interested in controlling dermatophyte overgrowth, malassezia and demodex, to improve MG function and reduce sensitivity inflammation but this is mostly considered barmy although jury's still out. Therefore I think anti-dandruff shampoos help sebaceous people like LM and we are tinkering with tea tree oil in vapour since tea tree shampoos are harsh. Shampoo ingredients could also flare you up if you're sensitive. But you're thinking this probably ain't you. I'm just putting it out there. Anti-dandruff shampoos are recommended for seb bleph.)

When we have surface inflammation we use cold compress to help calm things down, otherwise we use warm compress to get the oils and gunk to liquify - the goal is to keep the oils in all the different glands around the eyes moving. Arizona. I'm guessing humidity's difficult to achieve, even with goggles. Humidity in the room is a big help on comfort.

Have you tried cyclosporine yet?

[Cabut]

Cabut, It seems you're trying all the right things. At the moment the docs are calling rosacea 'hypersensitivity', which is why we get this derm/ophth confusing terminology scenario, so it's good to consider the bases of the different prescription drops and ointments (eyelid swelling is allergy, I think). Good luck clearing the MGs. We are pumping better oils with fish oil supplements and minimum animal and processed fats, lid hygiene, antibacterial drops in pulse therapy. LM would be on doxy but can't use oral meds.

(On facial rosacea with seb derm, I'm still interested in controlling dermatophyte overgrowth, malassezia and demodex, to improve MG function and reduce sensitivity inflammation but this is mostly considered barmy although jury's still out. Therefore I think anti-dandruff shampoos help sebaceous people like LM and we are tinkering with tea tree oil in vapour since tea tree shampoos are harsh. Shampoo ingredients could also flare you up if you're sensitive. But you're thinking this probably ain't you. I'm just putting it out there. Anti-dandruff shampoos are recommended for seb bleph.)

When we have surface inflammation we use cold compress to help calm things down, otherwise we use warm compress to get the oils and gunk to liquify - the goal is to keep the oils in all the different glands around the eyes moving. Arizona. I'm guessing humidity's difficult to achieve, even with goggles. Humidity in the room is a big help on comfort.

Have you tried cyclosporine yet?

Yes, too harsh. Restasis burned my eyes. The goggles too. They made my eyes much worse. I'm thinking this must be environmental or perhaps a food allergy. I'm in the process of getting allergy shots.They came up with 6 allergens including dust mites. You are correct, it is almost impossible to raise the humidity here. Some days the gauge is at 1% in the house! I've started taking fish oil again.I had been, but stopped when my eyes weren't acting up. As far as dermatophyte overgrowth, malassezia and demodex. I have heard the theories on demodex,but no science yet. I might try mild tree oil shampoo watered down on one eyelid as a test. The others I haven't googled yet. Thanks for the tips!

[littlemermaid]

I might try mild tree oil shampoo watered down on one eyelid as a test

Woah, that's gonna sting the eye surface! I'd have the eyebath standing by. You are very allergic aren't you.

[MaryVa61]

You can get 100% tea tree oil at a health food store or vitamin shoppe. If you're determined to try that it may be less irritating than shampoo with a bunch of other stuff added.

Just a thought.

[littlemermaid]

For shampoos to discourage flora and fauna we use mild versions, eg tea tree shampoo or anti-dandruff shampoos rotating active ingredients, letting the suds pass over the face and rinsing off in warm water, maybe give the eyes a gentle rub. NB this is for a specific rosacea symptom of a tendency to crusting sebum which harbours bugs. As MaryVA61 says, sensitivity to other ingredients flares the cheeks red (we are trying to stop this with beeswax/honey base moisturiser, which has an immediate calming effect and makes a bit of a barrier). However, this doesn't sound like you, I'm just mentioning it (although a quick PubMed search on 'tinea+eye' reveals some interesting cases).

Here's a useful summary of some current treatments 'Effective and evidence-based management strategies for rosacea: summary of a Cochrane systematic review' E.J. van Zuuren, S.F. Kramer, B.R. Carter, M.A. Graber, Z. Fedorowicz British Journal of Dermatology Volume 165, Issue 4, pages 760–781, October 2011 (free) http://onlinelibrary.wiley.com/doi/1...473.x/abstract

Our ophth has just shown me how, in rosacea hypersensitivity, even when there are no obvious signs of blepharitis and the lower lid margin is white and quiet, if you look right down under the lower lid there is allergy-type redness and slight swelling of inflammation. LM's eyelid margins are very well controlled but still we are having flareups with a reddish eye surface. This is why, I guess, without checking the MGs carefully and if there are no other skin symptoms, ocular rosacea sometimes looks like an allergic eye (without seasonal variation). An allergy-type immunological response to all sorts of things then, waiting for further investigation.

[littlemermaid]

Cyclosporine formulations

Restasis burned my eyes

Ophth just told us that he's experienced the 'drops can burn but the ointment doesn't'. Anyone else found this?