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Top tips for SJS

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  • Top tips for SJS

    Hi there.
    I introduce myself, i'm a guy from Uruguay living in Spain and at the first year of birth i had an Stevens Johnson.
    I've recently discovered this web (first time i google for SJS) and i'm so glad to have come across this site because otherwise i wouldn't have known about some things.
    I've compiled, so far, some of the most common treatments that SJS users use, and i think i'm going to try them all:
    -Scleral Lens-Boston Foundation for Sight
    -Onion goggles

    They seem all promising, especially the scleral lens but i have some doubts about them:

    -Why in 20 years i've never heard anything about scleral lens? nobody told me about them, maybe it's because i'm not fitted for them? it's strange because all of the SJS users use them.
    -When could i buy the Refresh product? here in Spain or via internet, i don't see them listed here in the shop.

    ANY kind of tip would be appreciate: a product, a general tip, a web...

    By the way, my current treatment is:
    -Autoserum eyedrops (as the main drop every 40min more or less)
    -Tobradex(two times per day)
    -Lubrifilm (as an ointment during the nightime)
    -Amniotic membrane transplant (every year or so, 4 times so far)

    Sorry for the extense but i have a lot of doubts.
    Thanks for your attention.
    Last edited by maxif875; 04-Feb-2010, 09:17.
    Shrimmers 3/10mm
    Autoserum(main drop).Dwell(3/day).Tobradex(2/day). Tranquileyes wth Lubrifilm(night). Onion goggles (In/PC).WileyXBlinkLA(Out)
    Entropion surgery
    Amniotic membrane:18months

  • #2
    wow, do u really use autoserum that much? I guess it would help me if I did it but I would need to give out too much blood for that. Some doctor suggested that I put preservative lubricants on the serum to have more quantity, but I can't risk using preservatives and autoserum is so helpful to me that way. I use Systane and Refresh Plus when I feel my eyes are dry.
    How do u use the autoserum when u're out?

    what the amniotic membrane transplant is about? I never heard of it!

    Tranquileyes helped me so much, my problem with tranquileyes is that I dont really use them while sleeping because it gives me headache..but everytime my eyes are tired..they really help restore my eyes.

    I'm doing some research nowadays about the Scleral lens, and it sounds so helpful..Eventhough, I'm really bad at using lenses, I've worn protective lenses when I got eye ulcers 2 years ago and I totally couldn't deal with them..but its worths giving a try I guess.
    "Give me a firm place to stand, and I will move the earth!", Archemedes.


    • #3
      Hey Rukapuka!

      Yes i use it every 40mins, i'd said even more, it's the best drop for me so far, and it's not that much blood, i go every month for a month supply... I surely won't put any preservative lubricants in it, it doesn't seem a good idea.
      In order to carry them i use this: i also tried this, today for the first time
      Did you try some of the products similar to tranquileyes listed here? I recommend you to find a fix for the nigh-time, i improved so much since i use tranquileyes maybe some other type of mask that doesn't press too much.
      The amniotic membrane trasplant is in "grosso modo" that they put an amniotic membrane on your eye/s for several days so the cornea could fed from it and heal, i dunno if i explain it well.

      Have you ever tried one of these treatments: Restasis, cyclosporine, Azasite, Punctal plugs or IPL. I've heard a lot about them but i'm not sure if they are useful for our particular case, maybe Rebecca or someone else could reply to this also... The best way to go seems to be the scleral lens from Boston, i'm planning to do it this summer, but i've yet too many doubts and it is very pricey! i open a thread for that matter:
      By the way, what do you think about using ointments at night? i use one called Lubrifilm (beneath the tranquileyes) and it's very thick, do you think is better using something less dense? which one do you use at night?
      Last edited by maxif875; 10-Mar-2010, 16:18.
      Shrimmers 3/10mm
      Autoserum(main drop).Dwell(3/day).Tobradex(2/day). Tranquileyes wth Lubrifilm(night). Onion goggles (In/PC).WileyXBlinkLA(Out)
      Entropion surgery
      Amniotic membrane:18months


      • #4
        Max, I had SJS in 2003 and I have not been fitted for the lens either, but I knew someone who had SJS as well, and he had the lenses and it helped him out so much. If you are having this much dry eye problem, the lenses might be great for you.