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My experience with keratoconus wearing sclerals

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  • My experience with keratoconus wearing sclerals

    Hi all,

    As a fellow specialty contact lens wearer, I'm interested to hear other people's experiences they've had. I was diagnosed with keratoconus ~5 years ago, and 3 years ago I switched from glasses into scleral lenses. I wore sclerals for ~2 years, and then switched eye doctors and got talked into switching to hybrids. Turned out to be a bad idea: I spent a tough year in them with constantly irritated eyes, and a few months ago when I was eligible for a new pair I changed doctors and switched back to sclerals.

    I'm currently wearing Onefit Cone by Blanchard, and here's my experience so far:

    The pros:
    • Comfort is a 10/10. I can easily forget I'm wearing them - no discomfort whatsoever.
    • Vision is very good - much better than I ever achieved with glasses. In glasses I can only get to 20/80 (with seriously thick lenses) down to 20/20 (or 20/10 on a good day)
    • I can pretty much wear them as long as I need to: by hour 12-14 I kind of "notice" them more, and can tell they've been in all day, but it's not intolerable.
    The cons:
    • There is a persistent redness on the bottom outside corners of both eyes that my Eye Dr. and I have been fighting to get rid of. It's really odd because despite how red/irritated/angry that area looks, it feels perfectly fine and isn't sensitive at all. If I don't wear them for a day, 90% of the redness will be gone by the next morning. But after a full day wearing them again, they're back to the same level of redness. My Eye Er. keeps tweaking the lenses - I'm currently on Day 3 of my 3rd pair where she's changing "edge profiles" and "flattening the woozles" and other stuff I'm not qualified to speak to.
    • I have a persistent problem with the lenses clouding up, and necessitating removal/cleaning/re-insertion multiple times per day. This has been a problem as long as I've worn contacts. I'm not sure what combination of oil, protein, and mucus (I definitely have oily skin and previous doctor commented on the oil on the lenses) but they appear as good as new after I rinse them.
    Below is my daily schedule, and I'd kill to find a way to cut down on removal/insertion:
    • 8:30am: Use T-Gel anti-dandruff shampoo (I don't have dandruff, but a dermatologist recommended it to reduce oil in hair), a daily face cleanser with salicylic acid, and Occusoft Lid Scrubs. Take lenses out of Clear Care overnight soak, rinse with BioTrue and fill with Unisol. Take a prescription drug (forgot which one) to cut down on oil production.
    • Sometime between 11:30am-3pm: Lenses will be oily/cloudy enough to justify removing/cleaning/re-inserting. The time of day here varies a *lot* - I haven't figured out why.
    • 7pm: Coated again, time to clean (significantly shorter time between first-cleaning/second-cleaning than morning/first-cleaning)
    • 9pm: Coated again, time to clean (gap gets even smaller here)
    • Bedtime: Take them out and put them in Clear Care overnight. ~50% of the time I use Miraflow, but I'm not very consistent about it. I don't keep a log or anything, but anecdotally I don't feel like its doing much. I know I once went on a trip and forgot it for a week, and I didn't see any real difference. If anything, it can occasionally irritate my eyes if I don't do a good enough job getting all of it off the lens before soaking (and it's filmy and annoying to get off). Do another round of Lid Scrubs plus daily face cleanser.
    I know my Eye Dr. wants me to switch from filling them with Unisol to using an alternative...I can't remember the name but Google tells me it may be Addipak. It comes in one-shot pink vials. I plan to at least try it, I just have a few more containers of Unisol I'm trying to use up. Does anyone recommend Addipak?

    She also wants me to try using a hot compress at night for 15 minutes, followed by rubbing the area around your eyes. I haven't been very diligent about that, mainly because I'm not sure how to tell if it's helping. Does anyone else try compresses, and if so, how do I know if it's working/I'm-doing-it-right?

    If anyone has a similar story or advice regarding keratoconus/sclerals/film/redness, I'd love to hear it.