Newbie wants to hear your ocular rosacea stories

[AdrianS]

Hi there:

I was officially diagnosed with ocular rosacea only a month or so ago. I am pretty mortified... never in a million years would I have thought such a thing existed, not to mention I had just thought of myself as being super healthy.

I would love to hear your stories and learn from your experiences. I don't know anyone that has this condition and doctors don't really know first hand. I would greatly appreciate if you ocular rosacea sufferers would drop me a note or replied to this post. Thanks so much!

1. How old were you when you were diagnosed with the ocular component of ocular rosacea?
2. and/or how long have you had ocular rosacea?
2. Do you have facial rosacia also?
3. Are the whites of your eyes red?
4. Do you have visible vessels around your eyelids and lashes?
5. Do you have decreased tear production too?
6. Do you take or have you taken doxy? If so, did you see any results? What were the results?
7. Do you experience pain as a result of ocular rosacea?
8. Have you taken Restsis for ocular rosacea? If so, did you notice any results and how long did it take?
9. Are there any other medications that you have taken for ocular rosacea?
10. Have you ever gone into a remission with ocular rosacea?
11. Has your ocular rosacea progressed and become worse?
12. Do you have any "triggers"? Can you drink wine or coffee?
13. Can you exercise without exacerbating the ocular rosacea?
14. And for women... And most importantly... (to me who still hopes to have children) have you ever had any children since being diagnosed with ocular rosacea?

Thanks again!

[Meebo]

Hi there:

I was officially diagnosed with ocular rosacea only a month or so ago. I am pretty mortified... never in a million years would I have thought such a thing existed, not to mention I had just thought of myself as being super healthy.

I would love to hear your stories and learn from your experiences. I don't know anyone that has this condition and doctors don't really know first hand. I would greatly appreciate if you ocular rosacea sufferers would drop me a note or replied to this post. Thanks so much!

1. How old were you when you were diagnosed with the ocular component of ocular rosacea? late 20's
2. and/or how long have you had ocular rosacea? not sure, but began seeing signs and experiencing symptoms this year
2. Do you have facial rosacia also? yes but very minimal redness
3. Are the whites of your eyes red? when its a bad day yes
4. Do you have visible vessels around your eyelids and lashes? same as above
5. Do you have decreased tear production too? no, i am not aqueous deficient
6. Do you take or have you taken doxy? If so, did you see any results? What were the results? currently taking oracea, not sure if working
7. Do you experience pain as a result of ocular rosacea? if bad day
8. Have you taken Restsis for ocular rosacea? If so, did you notice any results and how long did it take? no
9. Are there any other medications that you have taken for ocular rosacea? azasite
10. Have you ever gone into a remission with ocular rosacea? not sure what that means, but before i knew i had it i had a keratitis that needed to be treated with lotemax steroid.
11. Has your ocular rosacea progressed and become worse? i would not say it has progressed
12. Do you have any "triggers"? Can you drink wine or coffee? i am not aware of coffee or wine triggering any problems
13. Can you exercise without exacerbating the ocular rosacea? i guess my eyes may be a little redder after working out, but this is normal to an extent due to increase in blod presure
14. And for women... And most importantly... (to me who still hopes to have children) have you ever had any children since being diagnosed with ocular rosacea?

Thanks again!

Private message me asap

[AdrianS]

Thanks Meebo! I appreciate your frank answers. When I went to the eye doctor the last couple times my Schirmers scores were very low. They attribute it to the ocular rosacea, but I haven't read anything online to that extent. I know ocular rosacae causes MGD and blepharitis. So I don't know whether I attribute my tear deficiency to my long term BCP use (17 years) or the sleeping/anxiety/antidepressant pills I had to take over the past couple of years. Regardless, I quit all medications. Now I am taking doxycycline and am hoping that I don't have to stay on them forever. I hope to marry and conceive children one day.

[NYer]

- Ocular rosacea, and facial rosacea, are NON-PAINFUL conditions.

- Restasis was not designed to treat ocular rosacea and it does not treat it.

- Having children has no bearing whatsoever on rosacea nor vice versa.

- Birth Control pills did not cause your ocular rosacea.

Adrian, ocular rosacea is a pretty benign condition. You don't want to way over-react to the diagnosis of ocular rosacea to where you are blaming all of your ocular issues on the rosacea. Just be gentle on your skin and your eyes. "Triggers" are really more related to facial rosacea than to ocular rosacea. There is probably more to your diagnosis than ocular rosacea, which is just a pretty simple condition - it's not a disease. it won't affect your life any further than causing your eyes to feel sore sometimes. Most things you do won't have much of an effect one way or the other on ocular rosacea, other than heat.

[AdrianS]

I am actually in pain a great deal of time, didn't used to be, but now I wake up all through the night and sit at the computer through the day feeling like I have sand in my eyes.

Because of the inflammation and pain, the doctors put me on doxy, saying I may have to be on it indefinitely. You do not want to take doxy when you are trying to get pregnant or are pregnant. If you go off doxy, it is my understanding that you can go into remission.

I know birth control did not cause my rosacea, sorry I didn't mean to suggest that. I am wondering if birth control contributed to my lack of tear production, which may be exacerbating everything. I thought they are separate, but the doctors say they are related. I have no idea, and I don't think they really do either. From what I understand it is poorly understood disease.

While researching the condition on the web, they indicate that rosacea may range in severity. The web also indicates that there could be triggers. I am fortunate not to have it on my face. I hope you are correct about the triggers.

My doctors did say Restasis is used off-label for rosacea, though it has yet to work for me if it does.

[NYer]

Unfortunately, Doxycycline can help somewhat for facial rosacea but it does very little at all for ocular rosacea. Many doctors still prescribe it for that but it's been shown to do little or nothing for ocular rosacea.

I think what you meant to say was that if you go off of it you can relapse ("remission" is a good thing not a bad thing). That's true. If it has been helping you and you go off of it for a while, it's possible it can come back. But the reality is that if you don't have bad facial rosacea and you don't have acne from the rosacea, there is very little reason to be on the Doxy in the first place.

But with that in mind, yes, your rosacea can certainly go into a remission state where it won't be noticable until somehow it's triggered. Stay away from heat, spicy foods, alcohol. Those are pretty typical triggers for both, facial and ocular rosacea. Mostly heat for optical.

It's extremely unlikely that your rosacea will progress to a state worse than it is now. In addition, as I said earlier, PAIN is NOT a symptom of rosacea - neither facial nor ocular. If you are having eye pain, as many of us here are, it is not caused directly by your rosacea. Rosacea may be aggravating other conditions, such as MGD, and the MGD may be causing your dry eye and thus, the pain from the dry eye.

You can't cure rosacea but you can keep it under control.

Hormones are a big factor for many people with dry eye. In some cases, yes, BC pills contribute to the dry eye. In others, such as mine, BC pills actually help.

Whatever you've read on Restasis, it doesn't help with rosacea. You'll waste your time if you take it for that. Not to say that Restasis may not help whatever other condition you have, though.

Finally, do NOT be concerned about getting pregnant and having to stop taking Doxy. Again, taking it isn't going to do much and going off of it won't hurt anything. You may get a relapse but you're not going to progress to a worse state than you've already been in.

[Meebo]

- Ocular rosacea, and facial rosacea, are NON-PAINFUL conditions.

- Restasis was not designed to treat ocular rosacea and it does not treat it.

- Having children has no bearing whatsoever on rosacea nor vice versa.

- Birth Control pills did not cause your ocular rosacea.

Adrian, ocular rosacea is a pretty benign condition. You don't want to way over-react to the diagnosis of ocular rosacea to where you are blaming all of your ocular issues on the rosacea. Just be gentle on your skin and your eyes. "Triggers" are really more related to facial rosacea than to ocular rosacea. There is probably more to your diagnosis than ocular rosacea, which is just a pretty simple condition - it's not a disease. it won't affect your life any further than causing your eyes to feel sore sometimes. Most things you do won't have much of an effect one way or the other on ocular rosacea, other than heat.

Ocular rosacea in general is not a painful condition but can lead to pain if not controlled. I actually had keratitis in one eye directly caused to ocualr rosacea induced inflammation. I needed to be on lotemax to reverse the condition.

UNfortunately, i do find ocular rosacea to be a very cosmetic condition and my eyes are slightly red most of the day.

I hope anti-VEGF therapy proves to be successful in addition to ways to control inflammation.

[paintgirl]

I was 24 when I began to have very noticable symptoms, such as burning, photophobia, sticky discharge, and an inability to sleep through the night due to extreme dry eye discomfort. During this time it was generally only very bad in the morning. At 26 I began to show symptoms of facial rosacea, mostly broken capillaries and multiple papules on my nose. Ugh. Not too surprised as my father has severe rosacea and the blepharitis and MGD associated with ocular rosacea. I am 30 now and I am still trying to understand and come to terms with this journey. I am also wondering what else may be going on with my eyes -- perhaps the ocular rosacea is only part of the problem, but it all seems linked to inflammation. I have been on Restasis fo almost a year and have found it has lessened my discomfort somewhat, and even my eye doc noticed less dryness at my last appointment. However, the redness has not improved and if anything may be worse now. Lotemax seemed to help briefly with the redness during my first stint with it but the second time around only provided a brief cooling sensation. I have tried many OTC preservative-free drops, Systane, Celluvisc, etc. but most actually irritated my eyes more, except for genteal severe dry eye gel. This does ease the redness temporarily, and I use it when I am exposed to harsh environments, particularly large stores with flourescent lights (one of my triggers). I tried the genteal PM ointment but that made my eyes much worse, gooey and swollen. I took doxy for several months last spring and it provided some mitigation of my symptoms, including redness. My eyes were not bright and clear but they were much more "normal looking". However the redness rebounded immediately after I stopped. Guess I just didn't like the idea of being on antibiotics permanently, but I'm on the verge of giving it a go again. I'm curious about Oracea as it is a much lower dose, and seems potentially safer for long term -- although I doubt my insurance will go for it as it is much more expensive. Like you, I would love to have a baby at some point, and I urge you to not be afraid of how this might impact your symptoms. We still need to go on living after all. I know it's really hard living with bloodshot eyes and even harder living with the pain, but as this site testifies we are certainly far from alone. I urge you to take vitamins, Omega-3s (flaxseed oil,etc.) and also to try warm compresses. The rice baggy available here is very helpful with MGD and also very relaxing... Which with the anxiety and stress caused by these difficulties is very important. Just don't turn to wine to relax -- I'm tempted but as this is one of my triggers I inevitably regret it. Anyhow, sorry this is such a long reply, I'm just trying to figure it out, too. Good luck and hang in there!

[sazy123]

- Ocular rosacea, and facial rosacea, are NON-PAINFUL conditions.

- Restasis was not designed to treat ocular rosacea and it does not treat it.

- Having children has no bearing whatsoever on rosacea nor vice versa.

- Birth Control pills did not cause your ocular rosacea.

Adrian, ocular rosacea is a pretty benign condition. You don't want to way over-react to the diagnosis of ocular rosacea to where you are blaming all of your ocular issues on the rosacea. Just be gentle on your skin and your eyes. "Triggers" are really more related to facial rosacea than to ocular rosacea. There is probably more to your diagnosis than ocular rosacea, which is just a pretty simple condition - it's not a disease. it won't affect your life any further than causing your eyes to feel sore sometimes. Most things you do won't have much of an effect one way or the other on ocular rosacea, other than heat.

Do you mean ocular rosacea alone is not painful? because the resulting dry eye surely is, theres different severities, many will have redness which effects the eye surface but will get no dry eye. Others will have really bad dry eye with white eyes and red eyelids.

Ocular rosacea is one of the most painful and complicated causes of dry eye to treat i have come across, because there isnt anything that really treats inflammation of the eyelids. It doesnt respond to compresses as the glands arent blocked or massage etc. For Surface inflammation you've got restasis.

I certainly do not have any triggers, they just feel the same all the time. I have mild facial rosacea and theres certainly triggers for that- such as heat.

[Meebo]

I took oracea for a month and a half and have been off it for about 7+ days. I do not find my condition worsening, but i will say I do not find the amount of oil being excreted the same as the beginning. Howver, i feel the oil that was being produced was because of the azasite. 2 weeks on azasite had me feel cured, then the issues cam back and azasite made my eyes irritated.

Does oracea work? I dont think so for ocular rosacea. THey even say it on their literature. I may pursue a higher *much higher* dose of antibiotics as a test (100-200mg) to see if it helps.

I am also pursuing specialist-based blood analysis and dermo/allergist advice specifically from professionals that have seen my condition. I have not found these individuals but they must exisit.

Its hard to believe there isnt a chemical imbalance or direct trigger that is causing my eyelids not to excrete oil, but make them when treated with antibiotic. If its a case of inflammation, then there must be a way to reduce it. I rarely and barely drink and am using cetaphil soap in shower. Come on guys, this is getting pathetic.

I know a lot of you have very similiar symtoms as me, and I am searchign for an answer not only for me, but for all of us. 2009 will be the year I get hard answers.

[ronny]

facial rosacea is very very painful.

[jlg_uk]

I have to say that I'm increasingly leaning towards rosacea being the cause of my DES problems (posterior bleph & MGD).

I've not been diagnosed with this despite seeing a fair few "professionals" , although one person did agree it might be rosacea. My nose is always red, and my cheeks, forehead and chin show some redness. I'm not aware of flushing, though I've never paid much attention so I suppose mild flushing is possible.

I've not ruled out seborrhoeic dermatitis though, and my skin has never been brilliant (sometimes a little flaky in some areas). I think it's possible to have both. I really need to convince the NHS to let me see a dermo really....

Not sure how good the treatment horizon is really - but you can't give up, can you.

[jlg_uk]

Yes you can have both. From http://www.internationalrosaceafound...s_factor.php4:

While rosacea and seborrheic dermatitis are different skin disorders, sometimes they can coexist at the same time. Approximately 35% of people with rosacea have seborrheic dermatitis which makes for an even more sensitive skin condition.

Seborrheic dermatitis involves overactive sebaceous glands which cause inflammation, flaking and a red rash in the central portion of the face. If one looks closely, the flakes usually have a greasy look, smell and feel. The dryness of seborrheic dermatitis is perceived because of the flaking which consists of dried layers of accumulated oil.

Seborrheic dermatitis causes yellowish scales to develop on the scalp, the hairline and the eyebrows. This is often confused with the crusting and scaling on the eyelids that occur with ocular rosacea. A doctor should check any scaling around the eyes, as the potential side effects of ocular rosacea are more serious than those of seborrheic dermatitis.

[clioos]

Rosacea or Chemical Sensitivities

I'm fairly new to this website, but as I've said before, I've read a lot of the posts. While it's been a comfort, I really wish we were all better.

My diagnosis is Ocular Rosacea and MGD with a Shirmer's result of 0 in both eyes. My doctor also suspects that I have multiple chemical sensitivities.

Sjrogens has been ruled out.

Does anyone know about chemical sensitivities and what symptoms they create on the eyelids if any?

I've been having a really difficult time with severe burning and stinging around the eye socket and in the eyelids. At times, it's traumatic. I have to place ice packs on them during those times.

I'm trying to determine if the severe dry eye is coming from the chemical sensitivities or the Rosacea.

Does dry eye cause the inflammation or does the inflammation cause the dry eye?

Also, my glands are clogged and inflamed so maybe my tears are irregular and causing the dry eye, but what is causing the severe stinging?

Any ideas would be appreciated.

Thanks--Clio