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Old 06-01-2003, 10:15 PM   #1
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michelle_rt HB User
Post very concerned over ocular rosacea

I have acne rosacea. For over a year I have eye problems, and the eye doctors knew I had rosacea, yet said nothing of the possibility that acne rosacea sufferers can also suffer from ocular problems. Because the eye aspect was let go, my eye glands started to block. After a miscarriage, my face flared and I had to see the derm doc, I mentioned the eye problem, and was told the eye problem was indeed related to the acne rosacea and at this point I needed antibiotics. I did minocin for a month with slight improvement. I also did metralotion which does nothing during major flare. I had to stop the oral pills as we are trying to get pregnant again. The derm doc said there may be a hormonal component that makes me flare so badly. They now gave me cleocin(instead of metralotion) and desowen(desonide-antibiotic steroid cream)both are giving some facial relief. . I already do the eyelid scrubs and warm compresses with no relief.

I am not so concerned about how my face looks, but I am very concerned about my eyes. I have seen so many eye doctors prior to being told by the derm doc I have ocular rosacea, as well as after. I had complete exams, by MD eye docs which they find nothing of major concern. Prior to being diagnosed with ocular rosacea by derm doc, I was told by eye doc I had pink eye, allergy conjunctivitis, eye allergies, and was prescribed eye drops that did nothing or made matters worse. After telling the eye docs my derm doc said I have ocular rosacea, they said it “could be” ocular rosacea and if so it’s nothing serious, just a nuisance, and they give me wetting drops. They have prescribed nothing for the redness, or itchiness. My eyes are red, and dry, blurry, my vision seems worse (even after new glasses), I have photophobia. My last eye exam I had borderline high eye blood pressure. I now have white foamy stuff in the corners of my eyes. Yet my eyes don't crust or show signs of any sort of infection, no ulcers. I have scars on each of my lower eyelids, they said could be from a lot of things. My eyelashes are falling out, and they are all deformed. The derm doc does not help me with the eye problem, only the acne part of it. Also, when the rosacea flares, the eyes get worse, then my face and hair become excessively oily, everything gets out of control. So now I need lots of info from everyone for my next eye doctor visit so I am educated and so I can ask for appropriate treatment, I may postpone trying to get pregnant if they give me something to help my eyes.

What specific eye topical medications, including eye drops, cream or lotions for the eyelid, and oral medications as well as all other treatments are available to help the following:

reduce eye redness
help dry eyes
relieve eyelid itching and eyelash malformation and loss

I need everything you all have ever tried or are aware of to treat ocular rosacea

I have complete eye exams and eye dilations and nothing shows up. I am now a bit nervous if they aren't taking the eye problem more seriously, that they may have missed something, as I understand there are serious eye problems that can result from ocular rosacea. The reason I worry is that they told me it's not a serious problem, well it could be, so I feel I should have been told what to watch out for. ANY info you can provide me will be so appreciated.

 
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Old 06-02-2003, 05:26 AM   #2
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ronaldo1 HB User
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Hi Michelle,

I feel like I am reading my own story. I have had eye problems since April 2002 and I am still trying to get a handle on it all. I actually worked out myself that I had rosacea and had it confirmed by a dermatologist. In my case, I had a little redness on my face (nose and cheeks) and it was mild, so no one really realised I had rosacea. When I read about the link with the skin and eyes, I could not believe it.

I went to two eye specialists who had absolutely no idea what my problem was. I had to tell them. I was also told I had blocked oil glands in my eyelids and had blepharitis (inflammation of the eyelids) which is caused by the oil gland blockage which in turn leads to dry eyes and then inflammation of the eyelids). I was given chlorsig antibiotic eyedrops to help with the blepharitis and I had a bad reaction to that and ended up with episcleritis in both eyes. I looked like a total freak with bright red eyes and I still did not have any answers. I was given predneferin forte (steroid) eyedrops and this eventually made my eyes better.

I was put on Tetrex for 2 months and then minomycin for 2 months, none of which really helped my eyes. My current eye doctor has put me on doxycyline which has been the best thing so far for helping to unblock the oil glands. I currently take 2 a day. Officially, I have meibomian oil gland dysfuntion, the cause of which is unknown but in my case probably related to rosacea. However there are others on this board that have the same thing but do not have rosacea.

I am pretty sure that your eyelashes are falling out and growing funny because you have blepharitis. This needs to be treated because it can cause serious problems if it is left. One thing that you can do yourself is to do warm compresses twice a day to unblock the oil glands, then clean your eyelid margins with diluted baby shampoo, or if that is too irritating, with commercial eyelid cleaning solution. You should also use gels/artificial tear drops throughout the day to keep your eyes lubricated and lubricating ointment at night to prevent your eyes drying out. The redness in your eyes is likely to be caused by the dryness.

There are many creams and drops that they prescribe for blepharitis.I am sure your doctor will prescribe one if they find that you have blepharitis.

You mentioned that you were trying to get pregnant but if I were you I would absolutely make sure you DO NOT get pregnant while taking any antibiotics. My eye doctor warns me at every vist not to get pregnant while on doxycyline as it causes MAJOR birth defects to the baby. You should get advice from your doctor before going down this track.

I am curious...you said that your doctor thinks that there may be something hormonal going on..mine said the same thing. At some times of the month, my oil glands block up a lot more than other times and I can only put it down to hormones. Did he suggest any tests down this path? I have had my male hormone levels tested as I was also losing hair and that came back ok, but I am wondering whether I might have some sort of hormonal imbalance with te female hormones??? (I am 34 years old and have two children).

Michelle, I hope this information has helped. Please let me know how you go and post again with any more questions. Good luck. Please persevere until you find a good doctor who is willing to help you.
Christine

 
Old 06-02-2003, 07:14 PM   #3
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Join Date: Apr 2003
Posts: 339
DonnaDe HB User
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Quote:
Originally posted by michelle_rt:

I have complete eye exams and eye dilations and nothing shows up. I am now a bit nervous if they aren't taking the eye problem more seriously, that they may have missed something, as I understand there are serious eye problems that can result from ocular rosacea. The reason I worry is that they told me it's not a serious problem

Join the club I was told "you have blepharitis, it's like dandruff, you'll have it forever, here's some ointment, good-bye!" to "I don't see anything wrong" to "Suffer and maybe it'll go away." And these are some of the top people in their field, arghhh!

I don't really have any advice for you; just want to commiserate a bit so you don't feel like you're the only one who isn't taken seriously. Your eyelashes are falling out? Mine too. I was told I must be pulling them out or that I was imaging it or that I had a lot of eyelashes so what's the big deal. At least you have a diagnosis of something... I don't even have that! (But enough about me!) Don't you wonder why none of these eye doctors came up with your ocular rosacea diagnosis? I mean, *I* know about it and I'm not a doctor.

I will say, before you try to have another baby, please carefully look up ALL your medicines. Even topical meds can be absorbed, and have the potential for harming your fetus. Have you had any complete pregnancies? I'm just wondering how your skin would react to the hormone fluctuations. I have had acne since my teens, but I had the most beautiful skin during both pregnancies. I wonder if your rosacea would calm down or flare up?

Anyway, nice to meet you

 
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