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  • Restasis made my eyes worse. My story.

    So after trying countless of over the counter drops, and visiting with several opthamologists, the latest opthamologist recommended I try Alrex. This didn't help at all. I went back to visit with the same opthamologist and asked to try out Restasis. I believe this was the single biggest mistake I have made in my battle against dry eye.

    The reason I say this is because when my dry eye started it only affected one of my eyes and not both of them. When I visited with my opthamologist he told me that both of my eyes were inflamed and affected by dry eye, but only one of my eyes was more sensitive and giving me the gritty, sandy, stabbing, painful sensation.

    I started using Restasis twice a day as recommended every 12 hours. By the 3rd day I could not take the burning and stinging anymore and I didn't feel as if the drops were helping at all. It's taken me 5 days of mostly staying in bed and sleeping to even recover and be able to get on a computer to type all this.

    Now both my eyes hurt, burn and give me discomfort equally. The Restasis also dried them out more and made my vision even more blurry. On top of all this, the eye that was not problematic all of a sudden developed a new giant floater.

    I was pretty desperate for some dry eye help or a fix, but I think that Restasis should be handled with caution. My opthamologist prescribed it with no hesitation and told me it's a mild medication he had no problem prescribing. In my case it was not mild at all and very damaging. Instead of helping me make progress it greatly set me back as now I experience severe dry eye from both my eyes instead of one.

    It seems I've dug my hole even deeper and I just want everyone to be careful before using these drops. I used the original form Restasis, not the kind that's compounded at the pharmacy without castor oil. The kind I used included castor oil.

  • #2
    Calmer, I'm sorry to hear about your exacerbation. I used it for 9 months and found it made my eyes more dry constant burning. I thought that you just had to wait and keep using it and it takes a while for it to start working, but 9 months is enough of a trial to know it was making things worse, and not better.

    I think eye docs prescribe it routinely because at this time it is the only non-steroid eye drop available, and they expect it to work, yet for so many people it doesn't work at all.

    If you aren't able to get some moisture chamber goggles from dry eye store, then buy some swimming goggles and adjust it so it is loose and not super tight, and wear those at home. They will fog over, yes, but they will create a humid environment for your eyes and this can give some rapid relief. If the swim goggles are too tight even after adjusting them to the widest possible length, then cut the strap, and get some elastic (the kind for waistbands) from the fabric store and make your own strap so it's not too tight.

    hope this helps a little
    RG
    "Wishing I never had LASIK and was still wearing glasses and contact lenses"

    Comment


    • #3
      Originally posted by wantsim View Post
      Calmer, I'm sorry to hear about your exacerbation. I used it for 9 months and found it made my eyes more dry constant burning. I thought that you just had to wait and keep using it and it takes a while for it to start working, but 9 months is enough of a trial to know it was making things worse, and not better.

      I think eye docs prescribe it routinely because at this time it is the only non-steroid eye drop available, and they expect it to work, yet for so many people it doesn't work at all.

      If you aren't able to get some moisture chamber goggles from dry eye store, then buy some swimming goggles and adjust it so it is loose and not super tight, and wear those at home. They will fog over, yes, but they will create a humid environment for your eyes and this can give some rapid relief. If the swim goggles are too tight even after adjusting them to the widest possible length, then cut the strap, and get some elastic (the kind for waistbands) from the fabric store and make your own strap so it's not too tight.

      hope this helps a little
      I was thinking about trying some goggles. I appreciate your tips, tricks and suggestions for the more affordable method as well. You are way stronger than I am, I must admit. I'm not sure how you made it to 9 months on Restasis!

      I'm a bit different than most, I expect quick results I suppose. So for me it either relieves symptoms and helps right away or does not and I stop. I hope that you're not in too much pain and discomfort and thanks again for your reply. Before I developed daily severe and painful dry eye, I had no idea how complex the eye system was. I feel like a lot of us have become our own doctors in a way.

      Comment


      • #4
        I had a similar response to Restasis. My doctor felt I had a sensitivity to one of the components in it, not a true allergy, but hypersensitivity.
        Every day with DES is like a box of chocolates...You never know what you're going to get.

        Comment


        • #5
          Originally posted by CalmerThanTheDude View Post
          So after trying countless of over the counter drops, and visiting with several opthamologists, the latest opthamologist recommended I try Alrex. This didn't help at all. I went back to visit with the same opthamologist and asked to try out Restasis. I believe this was the single biggest mistake I have made in my battle against dry eye.

          The reason I say this is because when my dry eye started it only affected one of my eyes and not both of them. When I visited with my opthamologist he told me that both of my eyes were inflamed and affected by dry eye, but only one of my eyes was more sensitive and giving me the gritty, sandy, stabbing, painful sensation.

          I started using Restasis twice a day as recommended every 12 hours. By the 3rd day I could not take the burning and stinging anymore and I didn't feel as if the drops were helping at all. It's taken me 5 days of mostly staying in bed and sleeping to even recover and be able to get on a computer to type all this.

          Now both my eyes hurt, burn and give me discomfort equally. The Restasis also dried them out more and made my vision even more blurry. On top of all this, the eye that was not problematic all of a sudden developed a new giant floater.

          I was pretty desperate for some dry eye help or a fix, but I think that Restasis should be handled with caution. My opthamologist prescribed it with no hesitation and told me it's a mild medication he had no problem prescribing. In my case it was not mild at all and very damaging. Instead of helping me make progress it greatly set me back as now I experience severe dry eye from both my eyes instead of one.

          It seems I've dug my hole even deeper and I just want everyone to be careful before using these drops. I used the original form Restasis, not the kind that's compounded at the pharmacy without castor oil. The kind I used included castor oil.
          Hi, you might want to try this method

          apply refresh plus, 5mins later followed by Restasis

          I found less stinging

          Comment


          • #6
            CTTD, I'm sorry you had to go through that. I find it horrifying how that stuff gets doled out like candy to anybody who walks in the door no matter the specifics of their dry eye condition. I have known too many cases of doctors being really indifferent to severe side effects people were having. Has to do with conditioning about drugs being the 'only' answer and the fact that Restasis is "the only FDA approved drug for dry eye". Sigh.

            As nitrodrops suggested for some people buffering it helps - but for others, the toxicity is not counterbalanced by enough benefit to be worth it.

            I hope you pursue the goggles idea... it really does a lot for a lot of people, and unlike medical treatments there's no list of warnings and contraindications.

            Dry eye is a condition that can tax anyone's patience. It starts slowly, and the path to improvement comes slow too.
            Rebecca Petris
            The Dry Eye Foundation
            dryeyefoundation.org
            800-484-0244

            Comment


            • #7
              Originally posted by Rebecca Petris View Post
              CTTD, I'm sorry you had to go through that. I find it horrifying how that stuff gets doled out like candy to anybody who walks in the door no matter the specifics of their dry eye condition. I have known too many cases of doctors being really indifferent to severe side effects people were having. Has to do with conditioning about drugs being the 'only' answer and the fact that Restasis is "the only FDA approved drug for dry eye". Sigh.

              As nitrodrops suggested for some people buffering it helps - but for others, the toxicity is not counterbalanced by enough benefit to be worth it.

              I hope you pursue the goggles idea... it really does a lot for a lot of people, and unlike medical treatments there's no list of warnings and contraindications.

              Dry eye is a condition that can tax anyone's patience. It starts slowly, and the path to improvement comes slow too.
              Thanks Rebecca for your support. I really appreciate it. I find myself checking the forum every day trying to find new methods to deal with the dry eye. I think you are right, since I'm so sensitive to meds, the goggles sound like the best remedy for me thus far.

              Comment


              • #8
                CTTD,

                I remember you mentioned in another thread that you're in Edmonton. Well, I went on WileyX's website to look for dealer locations in Edmonton, but it seems that the search function is "broken". Anyway, perhaps you could find a Harley-Davidson dealer (where they sell merchandise) to try on some WileyXs and/or 7Eyes. There's also a company called Optiks International (there's one in Victoria BC that carries Wileys). You could also try them. Here's some info I found online about Optiks Intl in Edmonton:

                1408 99 St NW Edmonton (780) 484-6648

                Suite 9g-156 Mayfield Common NW Edmonton (780) 481-8245
                I have a *bunch* of pairs of WileyXs. I wear them all day, and they help. Good luck with everything.

                Comment


                • #9
                  Originally posted by spmcc View Post
                  CTTD,

                  I remember you mentioned in another thread that you're in Edmonton. Well, I went on WileyX's website to look for dealer locations in Edmonton, but it seems that the search function is "broken". Anyway, perhaps you could find a Harley-Davidson dealer (where they sell merchandise) to try on some WileyXs and/or 7Eyes. There's also a company called Optiks International (there's one in Victoria BC that carries Wileys). You could also try them. Here's some info I found online about Optiks Intl in Edmonton:



                  I have a *bunch* of pairs of WileyXs. I wear them all day, and they help. Good luck with everything.
                  Thanks for the info!

                  Comment


                  • #10
                    Here's WileyX's dealer location webpage: http://www.wileyx.com/ordering/dealer_locator.aspx. I don't know why I can't get it to work... maybe you can.

                    And just FYI... when you find a store, try on some pairs, price them, and then check online to see if the Dry Eye Shop or other has them for less. I get a little peeved that our prices in Canada are so much higher than the States. So I cross-border shop -- esp for my "beloved" goggles.

                    I hope your eyes love them like mine do!

                    Comment


                    • #11
                      i,m afraid i have the same problem,i started now for the second time with Restazis and it burns/ stings for hours...i also feel it dries my eyes even more and makes phophobia and blurred vision too...i also feel it damages my nose ( i have dry nose too beciause of Sogren and an old allergic rhinitis too) .But this is the only medication who could cure the inflamation of the lacrimal gland.and restore some tears ..if we are lucky...nobody can tell ,not even the best doctor,because every patient is different...i also think it,s importwnt to know what is your diagnose,because dry eyes have many causes ....and the treatments might be different...i saw it,s a common mistake made by many doctors,prescribing the same drops,including Restasis to all dry eyes patients...

                      Comment


                      • #12
                        Just want to add on for the record here, Restasis seemed to make my eyes dryer. I used it for 9 months, 2x day. I forgot it only twice. I did not at any time experience burning or stinging.
                        Last edited by PG; 15-Jan-2017, 13:17.

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