r/Keratoconus

I already know what works for me, so I’m just genuinely curious.

For background: I was dxed with KC in fall of 2024, by the time I got crosslinking, my vision was 20/600. I wear scleral lenses full time.

I tend to be able to wear my scleral lenses from 6:30 am when I get up to get ready (there’s no way I’m getting ready without them in lol) until I go to bed around 11 pm. That makes total wear time 16.5 hours. I rarely have to remove and reinsert unless I get an eyelash in my eye or my allergies are bad.

Is this abnormally long wear? Anyone else get this long of wear? Genuinely just curious how long people are able to wear their lenses for. Wasn’t sure if I just have an exceptionally good fit and tolerance or if more people wear this long lol.

FWIW, my optometrist is aware and says unless I’m having issues it’s fine.

My optometrist told me a good pair of sclerals can last around 5 years. But from discussing with other folks with KC, I keep reading that most end up replacing their lenses closer to every 2 years.

As far as I know, the infection risk rises pretty significantly when lenses are kept longer than they should be, even if they still seem "fine" day to day.

So now I'm trying to figure out what's actually realistic here. Is 5 years more of a theoretical maximum, while 2 years is what most people end up doing in practice?

Would be interested to read how long people here actually keep their sclerals before replacing them, and if their were any early signs that made you decide it was time replace them?

I went for an initial scleral lens session today. I have been getting 20/20 in my left eye and 20/100 in my right with glasses but static vision due to HOA which makes me miss the small details. My fitter gave me some rgps to do some vision tests and I looked in the personal mirror next to me. My God, I haven't seen so much detail on my face in 5 years, I had no idea of the imperfections. Red blotches, strands of hair missed from shaving, red veins in my eyes, dry crackling skin, small spots. I felt disgusting that I let it get that bad. I thought my vision was good enough to see this stuff but I've seem to have forgotten how good my vision should be.

I asked my optometrist if there is a maximum number of hours I can wear my scleral lenses per day and he said no. I would think just like soft lenses, one should wear it it as little as possible and give your eyes a break. What about taking a day or two rest from wearing them regularly? Should I be worried about potential risks or harmful effects from over wearing the scleral lenses?

In the keratoconus subreddit, a large percentage of us wear scleral lenses.

One thing I often read, and have personally experienced, is that after wearing scleral lenses and waking up the next morning, there can be a tingling or burning sensation. It can be quite painful, to the point where it’s difficult to even open your eyes for the first minute or so.

This might sound like basic advice, but it really helps: please wash your eyes with water after removing your sclerals. It makes a huge difference.

It used to be very hard for me to function in the morning before, but since I started doing this consistently, things have improved a lot.

I've always worn soft contacts and been relatively OK with my KC which is mainly bad in my left eye. There were some slight changes in my right eye and now the soft contact causing some irritation on the outside corner of my eye and so my doctor ordered my scleral lenses (and my insurance covered them!). We tried like a dozen other soft lenses and none felt right either.

We've gone through 3 fitting appointments with the fit and vision getting better in each one. At my last appointment he tested both eyes and the fit was as good as it could get (and felt OK to me, a bit weird, but I think that's more of just how they feel) and the vision in each eye individually was good... But together it's not. When I have both eyes open my vision feels off, not like double vision, but blurriness coming and going, but never getting close to as good as a single eye.

I've tried it a few times for 15-30 minutes to see if my brain adjusts to it, but they just won't work.

My condition isn't that bad, I can see 20/25 or better with glasses on through both eyes, I'm like -5.5 in my right eye and then -2.75/-2.25 in my left.

Any thoughts? My doctor said it could be that they just aren't for me. He's fit sclerals for a while and seems to be the choice in my area, so I don't think it's experience or anything like that.

Hello folks,

I need some advice from this forum. I recently got diagnosed with Keratoconus. It's very early in the right eye (I see glare in this) and the left eye is all good for now. I saw two doctors.

- One doctor told me to do corneal cross linking as soon as I can, it can be decided in 1-2 months but it has to be done since progression happens and better to do this considering it doesn't have any side effects.

- Another doctor said to observe for 4 months and get the scan done again. If it progresses then we will do cross linking, she said since I am 32 there is a probability it will not progress.

Is there any harm in going with cross linking just to be safe ? Only thing coming in my mind is why to do it if it is not needed now, as per other doctor.

It's okay to let go of things. What activity was no longer feasible, and what new thing did you find to enjoy instead?

I travelled to Chicago yesterday, and the idiot that I am forgot to pack saline solution vials. I have everything else. Do any stores carry preservative-free saline solutions that you guys know of? I just need some for a week..

I just started using the lens. Yesterday was my first day and I lucked out and got them on with no air bubbles on the 4th try. It felt like I was seeing the world through a new lens (literally). I could read subtitles, drive in the night without my eyes hurting and I saw an increase in my depth perception. Today however is different. I spent the last 4 hours inserting and removing it and I cannot seem to get rid of the air bubbles. Could anyone please give me tips for insertion in general and also with regard to the air bubbles? Can I remove the air bubbles while the lens is still in or is the only option to refill the lens with the solution and re-insert?

I have started using scleral lenses since last month. However, I am facing the ghosting issue while reading. Even after multiple visits to the optometrist, it hasn't improved.

While researching online, I came to know it is due to HOAs and lenses with wavefront technology being highly effective in getting rid of HOAs.

I would like to know if there is anybody who has faced a similar issue and has switched from normal sclerals to sclearls with wavefront technology and how's the experience?

I have ChatGPT giving me an update on this trial every few months. Thought it might be useful to flag to others. Extremely early days but something to perhaps keep an eye on (pun intended!):

TN‑001 (TheiaNova)

The first-in-human TN‑001 trial is now actively underway in Australia, with first patient dosing confirmed earlier this year. The study remains a small Phase 1/2 safety and proof‑of‑concept trial. No human efficacy data have been published yet.

ClinicalTrials.gov +2

Key points:

TN‑001 combines TGF‑β3 with dexamethasone as a topical regenerative therapy.

The goal is biological collagen regeneration rather than conventional mechanical stiffening.

The trial is still focused primarily on safety/tolerability and dose selection.

No peer‑reviewed outcomes on visual improvement, corneal flattening, or long‑term stabilisation have been released.

At this stage, the signal is still: “interesting science, but unproven clinically”.

https://clinicaltrials.gov/study/NCT07388069?utm\_source=chatgpt.com

I have sclerals that get me to roughly 20/25. So my day to day is fine but visual acuity isn’t perfect.

I’ve gotten in to golf recently and my go to is red or pink golf balls to help finding the ball easier on the fairways since red and green are opposite colors. But wondering if there’s a better option.

What color do you guys think is best for creating the most contrast?

I was diagnosed with keratoconus in my left eye 4 years ago at 16. I had CXL done only on the left eye and currently wear a scleral lens for it. I also use glasses since my right eye has mild astigmatism, but surprisingly it still hasn’t developed keratoconus.

My doctor still wants me to come in regularly (about every 5 months) for corneal topography, mainly to monitor the right eye. It’s been stable so far, though at my last visit 4 months ago he noticed something on the scan that made him a bit suspicious, so I’m going back again this month.

Subjectively, my vision feels exactly the same as it did 4 months ago, so I doubt much has changed.

Does anyone else here have moderate keratoconus in one eye while the other eye is basically normal?

For context I live in Los Angeles. I've been to multiple Targets, Walmarts, and even checked Amazon. Boston Simplus seems to be out of stock. I was able to snag a bottle at a Walgreens but that's it. Anyone experiencing this? Kind of nervous because it's the solution that's worked for me with sclerals.