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Update on Erik's Sclerals (or "Don't Cry For Me, Dry Eye Zone")

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  • Update on Erik's Sclerals (or "Don't Cry For Me, Dry Eye Zone")

    I have received a large number of e-mails from DEZ members, and have responded to only a few. Allow me to apologize for not addressing each of your questions individually; without inflicting upon each of you a lame excuse regarding how busy my life is (hey, so is yours!), I will simply tell you that since my trip to Boston seven weeks ago, I have completed (yet) another set of medical board exams (and with a bit of grace will soon be board-certified in a third specialty), am currently holding a pretty big part in a local play ("Joseph") with one of my kids, and have been through the hiring and susequent firing of one of our clinic's physicians.

    I mention the above, partly to excuse my lameness for not appearing here for the past 4 weeks (other than a jot, here and there), partly just to vent, but mostly to demonstrate that, in spite of what I am about to tell you, my life, is a happy, full one, and that I have no real complaints at the moment. Sure, I wish my eyes would feel a bit better, but I also wish I had a full head of hair, better posture, and a contract with the Red Sox.

    So, no further delay, then. Here's the deal, kids:

    I am not using my Boston Sclerals.

    For whatever reason, I have never been able to get comfortable in them for an extended time period. Yes, they resolve almost completely my dry eye symptoms (burning, surface pain), but they cause a different set of symptoms, mostly a foreign body sensation at the edge of each lens, which causes me zero discomfort upon first insertion, and progresses to pretty significant discomfort by about the third hour. I attempted to "break in" the lenses, to see if this effect would decrease over time, but alas, it has not. In the end, with my recent substantial comfort gains with restasis, I simply feel better with my baseline 1/10 or 2/10 dry-eye discomfort than with the 4/10 foreign body sensation that I get with my sclerals.

    But, some key points here:

    1) I am glad I went. I gave it a shot, met some incredible people (patients and BFS staff) and while it was not a complete success, it was not a complete failure, either (see #2 below). I will no longer have to spend any moments of my life wondering if this option would have worked for me.

    2) I have added to my "box of tricks" something I can use if/when I have a really bad day, or week, or month.

    3) Your mileage may vary. Dramatically. While I hope my experience can help those who have specific questions about the process of getting BFS sclerals, I think that the response to a given person to the lenses is not entirely predictable, and I think this has already been evidenced by members of this very forum who have posted about their experiences.

    4) A key part of my "failure" with these lenses (and I can't stress this enough) is my continued improvement on Restasis (which I had "failed" previously, by the way). I have gone from chronic 5-6/10 pain on a daily basis to 1-2/10, and an occasional blissful pain-free day. I truly believe that if I was still in that early, painful haze, the trade-off would have been in the sclerals' favor, and I would be wearing them more.

    Bottom line: Do I think DEZers should max out their last credit card to get scleral lenses? Probably not, since there is a very real risk that they will not benefit you. But if your insurance will pay, if you have a whole lot to gain (i.e., if you suffer more than I do), then I hope that you will consider a trip to Needham, at least to get the "fan test."

    I'll watch this forum to answer questions, and again, I appreciate the patience of those who waited to hear back from me. Of course if anything changes (i.e., if I start wearing/tolerating the lenses more), I will keep everyone informed.

    Your friend,

    Erik

  • #2
    Erik, my dear man, you need to clean out your mailbox so I can send you something. Maybe some Halloween candy?
    Don't trust any refractive surgeon with YOUR eyes.

    The Dry Eye Queen

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    • #3
      Got some space there now, Luce...

      Comment


      • #4
        Erik, how long have you been on the restasis before you noticed any improvement this time around? How long were you on it the first time?

        Also, regarding your sclerals, did you feel the discomfort during the first few weeks of wearing them, or did it develop over time?

        Thanks,
        Reg
        FOR WE WALK BY FAITH, NOT BY SIGHT (2 Corinthians 5:7).

        Comment


        • #5
          Erik-

          Thanks for the saga AND for the updates ... and best of luck managing your obviously full load.

          THIS is part of my trepidation re: sclerals. In MY case: long-term damage from BAK, I'm ALSO concerned about that "foreign body sensation". I don't understand the proliferation of nerves throughout the ocular surface well enough to know whether I'll have hyperesthesia on the sclera, too, as I clearly do on the cornea and on the limbus. A bigger lens COULD simply rest on another badly damaged portion of the eye.

          That said, I'm trying to make an appointment with a scleral specialist duo in France. Rumor has it, about $1500USD gets the deal done IF they're successful, and that...basically...you buy the guy a cheeseburger and call it quits if the project fails.

          I'm glad you tried. I'm glad you reported. I'm sorry it wasn't a magic bullet. I'm glad it's still another resource for you if need be. I hope need doesn't be (love THAT English!)

          Neil

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          • #6
            Originally posted by Reggie
            Erik, how long have you been on the restasis before you noticed any improvement this time around? How long were you on it the first time?

            Also, regarding your sclerals, did you feel the discomfort during the first few weeks of wearing them, or did it develop over time?

            Thanks,
            Reg
            Reggie,

            It took about 6 months to have noticeable improvement with the restasis, but now a year into it, I am still noticing improvement. BTW: it is not just my symptoms that have improved; my Schirmer test has also improved, from zero to four, and appears reproducible.

            I was on it for 9 months the first time, stopped it because I di not think it was helping, but looking back, it did help then also, just is a subtle, day-to-day improvement that is easy to miss if one slowly forgets how miserable they were on day one of the restasis.

            The sclerals were uncomfortable for me from day one, and never improved a lot, unfortunately. This wasn't something that suddenly showed up a month after getting fitted.

            Comment


            • #7
              Newbie Naievity

              Can somebody please explain what are "Boston Sclerals"? Also Eric, do you have punctum plugs inserted? I would like to try Restasis but have read that they've not shown effective in people with plugs...

              Peace, David

              Comment


              • #8
                About sclerals

                There is info all over this board, David. Here is one link. SEARCH BUTTON.

                http://www.dryeyezone.com/talk/forumdisplay.php?f=58
                Don't trust any refractive surgeon with YOUR eyes.

                The Dry Eye Queen

                Comment


                • #9
                  [
                  IF they're successful, and that...basically...you buy the guy a cheeseburger and call it quits if the project fails.
                  OMG, Neil you have me ROFLMAO. You buy the guy a cheeseburger!!!! Why not a plate of spaghetti and meatballs?

                  I'm just dieting and hungry and this struck me as really funny. It doesn't take much, you know, to strike me funny.
                  Don't trust any refractive surgeon with YOUR eyes.

                  The Dry Eye Queen

                  Comment


                  • #10
                    long term effects of restasis

                    Erik: Thanks for your sceleral update, it was really helpful. On restasis: being a doctor, do you have any data or opinion on the long term effects of using restasis? This is why I have hesitated since it is still fairly new (how long on market?) and I thought: What if it makes things worse once you stop using it? I understand it is no cure. anyway, thanks again. Robert

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                    • #11
                      Originally posted by DAVID RUBE
                      Can somebody please explain what are "Boston Sclerals"? Also Eric, do you have punctum plugs inserted? I would like to try Restasis but have read that they've not shown effective in people with plugs...

                      Peace, David
                      I have my two lower puncta cauterized (surgically closed). No plugs. However, the study which showed no benefit ion patients with punctal plugs was not designed (in research speak was not "powered") to address the punctal plugs issue. I would not let that stop you from trying it.

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                      • #12
                        Erik, I am sorry that the sclerals did not work out for you. Nothing ventured, nothing gained, I always say. I can tell you that I personally gained a lot from your posts about your experiences with getting the Sclerals and I really appreciate your sharing all of this with us. I also appreciate your ability to explain everything in lay terms. I am a nurse and I understand that is not always something that is easy for physicians (or nurses for that fact) to do! I am also glad that you were able to tolerate the Restasis and that it is helping you. You are such a great role model for everyone here, proving that there is more to life than DES and that for some of us, this disease can be managed. We just need to persevere and keep a positive attitude. Thanks again!
                        Every day with DES is like a box of chocolates...You never know what you're going to get.

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                        • #13
                          Hi Erik,

                          I'll second everything Kitty said. Thanks for reminding us that we can all lead productive, happy lives even with DES. I also read your experience at BFS with interest. I'm sorry it didn't work out for you though. I am glad to hear that you are doing well on the Restasis though. I've been thinking about giving that another try and might in another month or so. I hope things continue to stay manageable for you, and that you continue to improve even more on the Restasis.

                          -Shells

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                          • #14
                            To Kitty and Shells: thanks for your kind words.

                            Originally posted by Family man
                            Erik: Thanks for your sceleral update, it was really helpful. On restasis: being a doctor, do you have any data or opinion on the long term effects of using restasis? This is why I have hesitated since it is still fairly new (how long on market?) and I thought: What if it makes things worse once you stop using it? I understand it is no cure. anyway, thanks again. Robert
                            Robert, because I am not an eye doctor and for other legal reasons, I don't give medical opinions here, but I can tell you as a patient that I am far more scared of the steroids that are used early and often in post-refractives/Sjogrens patients (especially oral steroids, but drops as well) than I am of cyclosporine/restasis, which is a drug that has been used for decades in literally 1000 times the dose that one vial of drops gives. It has been on the market in the US since about 2000 or 2001 as an eyedrop, but was around as an oral medicine for many years prior to that. Restasis is a toxic medicine: it disables/kills lymphocytes, which are part of the immune system, and that is its very mechanism of action. Long term safety? I haven't read of any post-marketing-surveillance issues to date, but that does not guarantee that something won't show up in 10 more years.

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