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New member with DES & Ocular Rosacea

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  • New member with DES & Ocular Rosacea

    Hi,
    I have been looking at joining this forum for sometime. I live in Winnipeg, Canada. About 3 years ago I was diagnosed with Rosacea of the face- mostly flushing when under stress and anxious. I also have suffered from an anxiety disorder since I was 16. I work in the area of social work for the last 15 years. I was devistated when I found out about my face and it took about 2 years for it to get under control, even though it was considered minor, just in the last year I was starting to become more confident with it and then bam... I was hit again with Ocular rosacea (MGD), been on minocycline, doxy off and on, still on the minocycline, using noritate for my face and hot compresses for my eye every night, azythromycin around eyelids, eye scrubs. My eyelashes started to grow in different ways and still do at times. I also just found out I have Dry eyes too, not enough tears and they are testing me for Sjorgens and I will get the results back in a couple of weeks. I have been on a steriod for 2 weeks and have just started Restasis yesterday. I am so depressed b/c of this, it has affected my life in so many ways, I feel like I am going to loose everything. I love workign but am having a hard time as I spend alot of time in front of the computer. I try to rest ect. I have gone into a depression and had to start an antidepressant in the past couple of mths from all this. Will it ever get better. I would love to talk with others and see how you made it through. I am hoping the Restasis works, but from what I read, it does not seem to help many people. Of course being on the steriods was amazing. I should also say, I am no longer wearing contacts, using my glasses (which I am getting used to again), makeup sometimes I can but it burns, but I still use it .. I have such low confidence from all this, wearing no makeup would make me feel more down. I don't think the dr's realize how dry eyes can affect a person psychologically. I wonder why at 39 when I things were going to well for me that this had to happen. I am married, no children by choice (I am glad as I would never want to pass on rosacea to anyone), I have a little chihuahua- Peanut-- whom I just love. My husband has been amazing through all this but I really don't know if he realizes the pain this causes me. Thanks everyone who reads this and look forward to chatting. I need some support right now bad.

  • #2
    Hi sorry to hear what you are going though. The good news is you are fiarly new to it which means theres lots of treatments you havent tried. You say you have ocular rosacea, do you have MGD or aqueous deficiency. You might be able to tell if its MGD if youur glands are capped, or if after a compress you get blury vission or if you have inflammed eyelids- you willhave MGD. Are you on fish oils?

    I know what its like, i got dry eye (and prob ocular rosacea, mgd) at 20 now 27, noone really apreciates how severe dry eye can screw up your life.

    One question, when did you notice the dry eye, you say your on anti depressants- these can cause dry eye. I think they triggerd mine. If you had DE before this and antids didnt make a difference. stay on them because they will help.
    I healed my dry eye with nutrition and detoxification. I'm now a Nutritional Therapist at: www.nourishbalanceheal.com Join my dry eye facebook group: https://www.facebook.com/groups/420821978111328/

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    • #3
      Hi Ginger73, I have rosacea and ocular rosacea. I was diagnosed about 3 years ago. I have tried many different treatments and eventually had to have cornea surgery for RCE's due to a condition called Map Dot Fingerprint Dystrophy. I have a report to post on that surgery, but in the meantime, I have started to experience issues with dry mouth (scalded mouth) and am being tested for Sjoren's, although initial blood work has come back inconclusive. I think through all of the regimens (drops, antibiotics, steroids, hot compresses, etc.) the thing that has helped me most is moisture goggles. I wear them every night. I would give them a try. They have made a real difference in my life. There is a bunch of information on this site about them. I hope that you eventually get some relief from your condition. Hopefully you have a doctor who is willing to work with you on this.

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      • #4
        Hi,
        Your situation sounds very similar to mine, however, I have complications because I had radial keratotomy to correct my vision in 1994. My symptoms are so complex that I can't figure out what symptoms are from Ocular rosacea and what is from MGD and what are from the scars on my cornea due to the RK. I am also using Restasis and I can tell that it has helped with dryness when i first wake up in the mornings. I also can tell that the compresses and Azasite is helping. I use Systane Ultra all throughout the day and Thera tears gel at night. I am taking Oracea and can tell that it has also helped, but will probably take a break for a month. I drink around 65 ounces of water a day and take fish oil and several other supplements. To be honest I just have good days and bad days and can't really determine my triggers. It's very frustrating. I use a table top humidifier at my desk at work. I also use the computer throughout the day and the office is very dry. It is very embarrassing having bloodshot, swollen eyes all the time. I also can not go without makeup. I know what you mean about the makeup. I also am embarrassed to go without it. The real embarrassment is when my eyelashes fall out. I have patches that cycle in and out and I have to wear liner to try to camouflage that and just the fact that my lashes are so thin anyway. The best eyeliner that I have found that doesn't irritate my eyes is Loreal gel liner. On "bad eye days" I have a hard time focusing on what I am doing and after work just want to go home and go to bed. My dry eyes control my life! I am going to look into eyelid probing to see if this helps. I hope you are doing better and finding something that works for you.
        Jeanne
        Ocular rosacea, MGD, RK 94

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