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ocular rosacea? my happy ending

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  • ocular rosacea? my happy ending

    My dry eye story – meant to hopefully encourage others dealing with their situation. Hopefully this won’t bore anyone – I will start from the very beginning. I began to have troubles with dry eyes in my late twenties. I started to have problems wearing contacts, first when I was at work and eventually almost anytime I tried to wear them. By my early thirties I would only wear them when I wanted to look my best or take part in rigorous physical activities without having to deal with glasses sliding down my nose. At that time, radial keratotomy (RK) had been performed in the US for about 5-10 years – Lasik was only experimental and performed only in Canada. My eye doctor mentioned RK to me a few times during my eye exams and by the time I was 34 (1995) he had me convinced to take the plunge. Thus, the start of my trials. The day after surgery on my first eye I experienced extreme discomfort and pain. My doctor told me that the discomfort would pass and two weeks later I had my other eye done. Needless to say, my discomfort did not pass and over the course of the following year and after many frustrating doctor appointments where he told me that he could see nothing wrong and that he had not had any other patients with similar problems, I gave up on him (I know that RK is not known to actually cause dry eye like LASIK can, but if you have dry eyes and then perform surgery on them you are looking for trouble) . I was sure that I had ruined my life for the sake of vanity and convenience. Trial and error lead me to the eye drops that worked best for me at the time – refresh plus - and for a while I also taped my eyes closed at night. Eventually, for the next ten years or so, I figured out how to be fairly comfortable and resumed living a fulfilling life Then; in January of 2004 I started noticing “pimples” on my lower eyelids. I went to my general physician who thought it might be an allergic reaction to something and had me use cortisone cream. At this point, I was not yet feeling increased discomfort in my eyes. This treatment didn’t work and the pimples/rash got worse, so I was sent to a dermatologist who believed it to be an allergic reaction to my eye drops. I was in disbelief as I had been using them for almost ten years with no problems. She said that happens sometimes and that I would have to find different drops to use. Well, that sent me into a tailspin as the refresh plus really seemed to work for me and the thought of having to once again be uncomfortable was very distressing. Another month went by and I began to have increased pain and dryness in my eyes along with the “pimples”. I went to my eye doctor (not the one who did my surgery – a much kinder one that I had found I could trust). He diagnosed me with meibonium gland dysfunction (MGD) which he believed had led to a staph infection around my eyes. Unfortunately, he didn’t have any good options for me other than steroidal eye drops and cream. He also could not give me any idea why I had developed this problem. I became very frantic to find a way to alleviate my ever increasing pain and horrible dryness. I searched on the internet and thank God found Dr. Holly’s Dry Eye Institute site. I sent an email to Dr. Holly explaining my plight and basically begged him for help. My hero Dr. Holly came through for me and had a recommendation of a doctor in my area that I should try (mind you, he told me he doesn’t make a habit of doing that – he just happened to be acquainted with this doctor through the University of Texas). Dr. Steven Laukaitis in Kirkland Washington came into my life and completely saved me – he diagnosed me with ocular rosacea as the underlying cause of my MGD and the cause of the rash on my eyelids, and promised me he would get me through it until I was under control and comfortable once again. He even put me in touch with another patient of his who he had helped overcome her dry eye condition – this was a God send to me as I felt so alone – with no one who truly understood what I was going through. I am sure we all know what that feels like! Over the course of the next year, he saw me every 6 weeks and we tried many different regimens, including lifestyle and dietary changes to avoid what I found to be “triggers” for my rosacea, Dr. Holly’s wonderful Dakrina drops, metrogel, doxycycline, fish oil capsules, flax seed oil and Restasis. (*see below for my adjustment to Restasis for anyone interested in trying it or who has tried it but stopped due to the burning side effect.) During this time I also had to work half days for a month as I was in so much discomfort. Bottom line, I ended up with a happy ending – my current and effective regimen to control my ocular rosacea is: lifestyle/diet change (gotta watch those “triggers”!), metrogel carefully applied to my eyelids, Restasis 2x per day and Dakrina/Dwelle drops as needed. At this point, I usually only have to use the Dakrina once or twice during the day at work and on the weekends sometimes not at all! Sometimes I have to drop more, in extremely dry, windy, dusty, or smoky areas. I also usually use Dwelle once, right when I get up in the morning – but I don’t always even need to do that. There are days when all I use are the 2 drops of Restasis! Amazing to those of us who have been known to have to use drops every 15 minutes, right? And I drink LOTS of water each day.

    This might seem like a lot of work, but for me, it just is no big deal – just part of my routine. And a small price to pay for eye comfort. Honestly, believe it or not, right now, my eyes are the least of my physical concerns – after 12 years of being a long distance runner, I managed last year to do a number on BOTH knees and have been trying to find my way back to health and physical activity. I never thought that anything could be as frustrating as dry eyes, but this has changed my mind . I just wish I could find my Dr. Laukaitis or Dr. Holly of orthopedic doctors!!!!

    So hang in there people – I believe there is hope for every situation. And if anyone wants to contact me for support or information, my email address is: lynnie5510@yahoo.com.

    Lynnie


    *RESTASIS adjustment – Dr. Laukaitis had me start using Restasis gradually – if anyone is interested in the exact regimen, let me know, but basically it went something like this – use a Dakrina drop (or your favorite drop)and wait 15 minutes before each Restasis drop, then 1 drop every other day to start, then after a week or so, 1 drop each day, then eventually 1 drop a day for 2 days, 2 drops a day for 1 day, 1 drop a day for 2 days, then back to 2 drops a day a few days later – eventually you will be on the prescribed 2 drops per day. That is not the exact routine he gave me but you get the idea – work into it gradually vs. diving in to the full dose right away. And “cushion” your eyes 15 minutes before Restasis with your favorite eye drop (after you adjust to the Restasis, you won’t need to do this anymore.). Restasis works well for those with ocular rosacea as it deals with dryness by decreasing inflammation – and rosacea is an inflammatory condition. So it works real well for me.

  • #2
    Hi Lynnie,
    Way to go !! I am very excited to hear you story !!
    I am just curious how much doxy (for how long) have you taken and what effects have you seen from it.
    Thank you.

    George

    Comment


    • #3
      an addition to my original post

      me again - in my original lengthy post I actually forgot one possibly important thing - early on, when I was still wearing contact lenses, my doc cauterized my lower punctal openings (that was fun - NOT!).


      George - in reply to your question below:
      "I am just curious how much doxy (for how long) have you taken and what effects have you seen from it."

      I haven't been on doxy for quite some time now - I only took doxy for the first year and maybe 3 months in order to give me relief while my other treatments (lifestyle/dietary changes, metrogel, restasis ) kicked in. From what I recall, I took 100 mgs 2x per day (I will check when I get home to make sure this is correct - if not, I will post a correcting message tomorrow). Dr. Laukaitis did not want me to use antibiotics long term - plus from what I understand, the effectiveness of the doxy wears off over time. But, having said that, it was a lifesaver early on - I started to notice improvement in a couple of weeks and the full effects happened after about 4 weeks. What I noticed was that my eyes felt more moist with less burning - and the rosacea bumps around my eyes totally cleared up. It definitely helped me in the short term. and I keep some around in case of "emergency" but have not had to use them thank goodness!

      hope this has answered your question George - Lynnie

      Comment


      • #4
        Lynnie

        Your CL history sounds so much like mine. I too wore contacts lenses for 10 years (including the original extended wear) then started having problems with them in the last 2 years, eventually giving then up completely in 1988. I was told I had GPC. Who really know however.

        Flash forward to about 2000 when my day to day ocular discomfort started. Gritty, tired eyes, burning, swollen puffy lids in the am. I had difficulty with clear vision and a hard time on the computer. My OD just kept changing my reading glass prescription but of course, that did not help the itching, swollen lids, etc. and pain. But it was not a constant problem so I didn't pay that much attention with other health issues I was dealing with.

        Jump forward to Lasik in 06 and severe dry eye post surgery. Now it's MGD and blepharitis and the surgeon tells me 2 months after that I have ocular rosacea based on a history of acne. (and yes, I told him all about my pre-lasik eye problems as well as his nurse and his technician).

        My question is how do MD's definitely diagnose rosacea so that you know how to treat it? I also take medications that could result in MGD. I suspect I also have some type of infection given what happens when I tried to stop tetracycline. And Restasis hurts so much I can't use it.

        I have those little bumps along my upper lid margins, though one of them in particular that has been there for years is finally getting smaller, I assume due to the Tetracycline.

        I find getting answers to be so frustrating. Does a history of acne mean everyone has ocular rosacea?

        I know you probably can't answer these questions but I am seeing a dermatologist next week and am trying to make sure I ask the right questions. I also think I need to consult with an MD who specializes in this. I feel this is beyond my OD's experience.

        Thanks for listening!

        Natalie

        Comment


        • #5
          hi Natalie - oh my gosh - I feel your frustration and can so relate to it. regarding the diagnosising of rosacea/ocular rosacea, it is diagnosed by symptoms (redness, pimples/red bumps, MGD) (side note: - from what I understand, currently, refractive surgeons are supposed to address and resolve dry eye issues BEFORE performing surgery. and some docs state they will not perform refractive surgery on someone who has a dry eye condition such as ocular rosacea. but I bet not all follow this ethical protocol as they are seeking the business above all else. like I mentioned before, the surgeon who did my surgery has never admitted that my RK could have increased my dry eye discomfort. I realize that it didn't cause it (like LASIK can), BUT - it just goes to figure that a dry eye will not heal as easily or as well to surgery as a normal eye and that even minimal scarring can lead to problems in ocular surface wetting. sheesh. )

          re yr question about all people with facial rosacea having ocolar, not not all do. but apparently 50-60% do to some extent. some might have such mild symptoms they don't even notice and some others have extreme symptoms - this was my case due to my preexisting dry eye conditions and RK history. the dermatologist and my routine eye doc didn't even pick up on the ocular rosacea as I didn't have any facial symptoms (vs. Dr. Laukaitis my dry eye specialist who diagnosed and treated me accurately)- I was a rare case who actually experienced the ocular type of rosacea prior to the facial type.

          good luck with your treatment - like I have said, if I had to pick the 3 major things I do that seem to control my rosacea they are: restasis, metroGEL , and control of triggers.
          RE yr difficulty using restasis, please see my original posting on how I adjusted to it - I had not been able to use it previously either, but thanks to working in to it gradually, now have no problems with it and I really think it is key to my controlling my ocular rosacea.

          Lynnie

          Comment


          • #6
            Thanks Lynnie!

            It always helps to talk with someone who is going through the same thing. I don't know what metro gel is but I am going to investigate. I don't want to try too many things all at once so I can see what really works. And hopefully the dermatologist can give me a real diagnosis since I wouldn't believe anything my Lasik surgeon told me ever again.

            If I could just get the lid margins under control I would feel a lot better.

            Take care!

            Natalie

            Comment


            • #7
              Hi Natalie,
              I was diagnosed with Ocular Rosacea recently and I don't have acne Rosacea.
              But I had acne 15 years ago and I still have an oily face skin.
              I am just wondering what treatment you follow ..
              I have 4 plugs and watery eyes with no pain but visual acuity problems.
              Thanks,

              George

              Comment

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