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newbie here, but not to the condition

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  • newbie here, but not to the condition

    Near as I can figure, I've been trying to ignore this dry-eye problem for about 11 years. Ignoring for several reasons, most notably because I tend to avoid docs unless there is uncontrollable bleeding or protruding bone. In addition, I have been caregiver for both parents, an ill spouse and alcoholic sibling, while working full time in a stressful environment all the while. (Hence, my avoidance with the medical community on my own behalf.)

    I finally reached the end of what my eye doc refers to as "homeopathic" treatment (supplements, warm soaks, hydration, expensive OTC eye drops, yada yada yada), and started Xiidra about a month ago. What brought me to do this was the inability to get through the sticky crud on the outside of my lower lids (without peeling it off with a tweezers), and what that crud did to my skin - it puckers it up like crepe paper at a Homecoming dance. My eyes aged 20 years in a few short months. Stopped wearing makeup long ago....but now, cannot even tolerate diluted baby shampoo washes. Per doc's kind assessment, I have none of the other crummy issues many of you are dealing with, just undiagnosed primary Sjogrens Syndrome.

    My reason for being here is to learn. I am hoping to connect with others who are simply having trouble dealing with what that mucous does to the skin around the eyes. Small potatoes for what many of you are going through, but I've been to other places seeking understanding, and not finding it. Hoping some here have insight on this.

    Thank you, and blessings to all.

  • #2
    Hi rapnzl. My dry eyes are likely primarily due to Sjogren's as well. I've had crepe skin on my lower lids and around my eyes, as well as dry and red raw skin. What one of my eye doctors recommended was to use Systane night time preservative-free ointment on the skin around the eyes. She said it was like using Aquaphor or Vaseline, but better because the Systane is PF, and if some happens to get into the eye, that's okay since it was meant for the eye in the first place.

    https://www.amazon.com/Systane-Night..._1509615576952

    It does work well. I wear sclerals during the day, so find applying the gel before going to bed works best. Usually my skin is pretty well healed after a few nights applying the gel.

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    • #3
      Thank you, Hokucat. Great to know there is something I can try that might actually work!!!! Pardon my ignorance, but "sclerals" are what, exactly? Again, my thanks.

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      • #4
        Scleral lenses are gas permeable nickel-sized dome-shaped lenses that vault over the cornea, so it can cover your eyes in saline to keep them moist. The lens edges sit on the white sclera part of the eye. Sclerals have been used increasingly to help manage dry eye symptoms. Not everyone can tolerate them, but if you can, it can provide some immediate relief. I wear mines 12+ hours a day and it helps a lot with my daily functioning. It is a key part of my daily regimen.

        There are many good brands/fitters...the expertise of the fitter is key. Some top brands/fitters are Boston PROSE, LaserFit, and EyePrintPro. I wear PROSE. Here is a good description of sclerals in general, from their website:

        http://www.bostonsight.org/PROSE/PRO...grens-Syndrome

        Sclerals can cost thousands of dollars, but if you have good medical insurance like I do, often the majority of the costs are covered. The PROSE fitters work directly with the insurance company, whereas I am not sure the other two do, but that may have changed.

        You might consider going for a consult to see if sclerals are an option for you. Usually, at least for PROSE, at the consult the fitter has you try on a sample pair of lenses for an hour or so, to see if you can tolerate wearing them, and if it helps your symptoms, to determine if you are a candidate to proceed with the fitting process.

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