UK Keratoconus Self-Help and Support Association

Ok, so for some context, I've been battling keratoconus/RPGs/various other lenses for the past 2 years. I started with RPG, sight was incredible (like entering a new planet, as I always say), but I couldn't wear them for any great length of time. The maximum was maybe 2-3 hours. Despairing, I gave them up and tried piggybacking, soft-hard lens hybrids, none of which made things any better (the former only made the vision worse and changed comfort very little; the latter wasn't powerful enough in correcting the conrea).

So after months of frustration and defeatism, I wanted to try and go back to the RPGs. My first few adventures with them were identical to when I first started with them - couldn't wear for too long, or one lens was fine but the other wasn't etc. But for whatever reason - I don't know if it's because I'm finally buying the stupidly expensive Boston conditioner/cleaner - I've been able to wear them for 8+ hours this past 2 weeks. It's really been quite astonishing. Now I still get some ghosting, it's always there a little, but as far as reading books it's been almost perfect. People have no idea just how wonderful it feels to be able to read outside in the sun/or by the window.

However, this is early stages. There have been a few days where one eye will become very bloodshot after a few hours and I feel like it's only sensible to take it out for a rest. And here's a question: for all the talk of perseverance, are we to take our lenses out immediately after irritation + multiple lines of bloodshot? Because just 5 minutes ago I took one out after seeing the bloodshot but otherwise would have happily kept them in despite the mild irritation. And is it ever advisable to put them in again after the bloodshot has cooled down, so to speak? I suppose I'm asking: How far do you battle discomfort in the name of building resistance to the lens?

One other thing and I'll shut up: I recently found out one of my older cousins (mid-40s) has keratoconus and he uses the smaller RPG lenses. As you can imagine, it was really exciting to discover this! So he told me a bunch of stuff I found quite interesting, but which contradicted some things I've been told by my own clinic. He said he rarely uses eyedrops because, in a way, they help to erode the cornea (or something along those lines, perhaps less dramatic), and will actually make it harder for your eyes to adjust/resist the lenses. Now my own clinic people have advised me to administer drops at least 3 times a day to prevent dry eye! As you can imagine, I'm a little confused and not sure what to trust. I recognise that everyone's case is different and that what he's been told may not apply to me, but it would be helpful to let me know what you think about this. Has my rejection of eye drops recently been a factor in my ability to wear both lenses for far longer, for instance?

Apologies for not being briefer! Thanks.

Hi Steve - it's good to hear that you're getting on better with your lenses. But you're right to take them out if your eyes become bloodshot. It's frustrating, because we all have 'bad lens' days - some days the lenses are fine, others they dry out and cause problems. Probably to do with the environment we're in (eg harsh air conditioning) or how tired we are, or pollen in the air or a dozen other reasons!
As you say, we're all different. I could very rarely re-wear a contact lens once it had come out for the day but you might be OK after a few hours 'rest'. As for lubricating drops, I'm puzzled by the advice your cousin was given. It's when the eye dries out and there isn't a tear film between the cornea and the lens that the lens can rub on the cornea and cause damage. Eye drops help to prevent that. Were you advised to use a particular type by your clinic? They come in various consistencies, some very watery, others are thicker and again different ones suit different eyes so it might be worth trying different types to see what works best for you.
Good luck!

Hi Anne, thanks for the reply. That makes sense, it's a shame it feels like a lottery sometimes! If the odds are mostly positive then I reckon I could get by.

Yes, I was a little baffled by that information too. I'll need to grill him on it next time I see him. The drops they advised were the Optive Fusion 10ml. Very expensive, but I can arrange to get them claimed. I'll maybe start trying them up again then, they might even improve my already improving case! I don't think they were recommended especially for my case; they're just the drops they use at the clinic.