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Dry-eye, EBMD and RCES

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  • Dry-eye, EBMD and RCES

    I am finally systemically treating my dry-eye disease, and have found a dry-eye ophthalmologist who listens and did purposed tests.

    I would appreciate any feedback from members with experience in these matters.

    Dr. Williams (Arlington, Washington), a dry-eye specialist I saw on Sept. 4th, did some detailed tests as to why I have dry eye (finally!)

    1. I don't blink completely most of the time (thus stimulating the meibomian glands, to produce the oils for the cornea).
    2. A number of my glands were truncated (not atrophied, thank God), so not producing at all.
    3. Dr. Williams couldn't test evaporation rate, because I had used drops that day; he'll follow this up in 2 months.

    I had a Lipiflow procedure done 3 weeks ago. Dr. Williams said that after 2 weeks, I should begin to notice glands producing again, but I've had some recent, uncomfortable days and nights. Per the doc, I am seeing if ointment helps at night [it has not usually made a difference].

    Doc could see how the dystrophied part of my cornea (map-dot/EBMD) doesn't get tear film/oil over it, to produce enough whetting for that ridge-like area just at my blink line--and makes the erosions happen so easily when I open my eyelid.

    My "homework" includes 1000 mg of Omega 3 daily, blinking exercises (aargh), compresses daily, and some drops--both Xiidra and OTC, in addition to thyroid support to correct leaning towards hyper thyroid (blood work shows I'm not at hyper yet), and eliminating gluten.

    I have read hyper thyroid affects eyelids closing completely.

    Overall, I am hopeful to be headed in the direction of systemic treatment, and a real dry-eye doc who can give me answers. I got a voicemail from the eye surgeon's office, to schedule that invasive PTK. I won't decide on that until November.

    I really hope to get off the Xiidra at some point, due to cost and being unsure whether it's doing any good.
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    EyesOpen

  • #2
    Xiidra is really effective for me. I am currently on both Restasis and Xiidra BID, and it has helped me. If you have toothpaste glands, you have benefit from topical or oral Azithromycin.

    Since you are in Washington State, you DEFINITELY should give a visit to Dr Laura Periman (https://www.dryeyemaster.com/) -- she's a really good dry eye expert. You should checkout her twitter https://twitter.com/dryeyemaster as well.

    Also, you should definitely give IPL a try. LipiFlow can only clear obstructions inside your glands, for reasons unknown, IPL seems to have the ability to reduce inflammation and make your glands secrete good oil again.

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    • #3
      Originally posted by deep_dry_eye View Post
      Xiidra is really effective for me. I am currently on both Restasis and Xiidra BID, and it has helped me. If you have toothpaste glands, you have benefit from topical or oral Azithromycin.

      Since you are in Washington State, you DEFINITELY should give a visit to Dr Laura Periman (https://www.dryeyemaster.com/) -- she's a really good dry eye expert. You should checkout her twitter https://twitter.com/dryeyemaster as well.

      Also, you should definitely give IPL a try. LipiFlow can only clear obstructions inside your glands, for reasons unknown, IPL seems to have the ability to reduce inflammation and make your glands secrete good oil again.
      Since I'm in the early stages of finding out the actual status of my MG, and tear evaporation and quality. I'll remember IPL if I need to get further into treatment than the Lipiflow.

      Since being diagnosed with dry eye, I have been concerned with not just managing the DE, but doing so enough that my EBMD isn't causing the RCEs. Having that dystrophy seems to add more research and trial and error to stabilizing.

      Thank you, deep_dry_eye.
      Last edited by EyesOpen; 06-Oct-2018, 18:16. Reason: Adding to answer.
      EyesOpen

      Comment


      • #4
        "Model patient" was the comment from Dr. Williams at 6-week Lipiflow follow-up. "Not the same patient" as pre Lipiflow)!

        Having only heard about my narrow angle (now gone), my two dystrophies, and my DED for almost a year now, I am reveling in the news that my eyes are doing so much better.

        Osmolarity of tears: L302 R295. The optimum is below 300, so right on high end of preferred numbers, and “no deficiency of aqueous.”

        No staining of fluorescein, unlike pre-Lipiflow; this means that my "epithelial is not breaking down."

        All that said, I still have EBMD, so managing my DED is crucial to avoid RCES. The possibility of needing PTK is lesser, if I can continue to manage my eyes with blinking, compresses, some good night- and day-time eye protection, and drops.
        EyesOpen

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