UK Keratoconus Self-Help and Support Association

Hi all,

New member here, little bit of background to set the scene.

I'm 27 and was diagnosed with KC at approx 16. My left eye was always worse than my right. Started with soft contact lens for a few years as directed by the optician (as appointed following consultantation at the local hospital and diagnosis). After a few 3 -4 years wasn't happy with my vission so moved onto RGP lens which is what I have today.

My KC has by and large been stable for a number of years now, although the vision in my left eye with lenses is not amazing, but my right eye makes up for it. I find contact lenses fine, rarley irratable and I wear them all day (compelte blurr without them). Only dvelopment in last couple years is a slight worsening of light scatter (evident whilst driving at night etc.) that isn't so annoying but is something I wouldn't want to get worse. The 1 annoying thing is that in the left eye (presuambly due to more more advanced KC) the lens pops out now and again - luckily I've so far been able to find it and steralise etc. becuase I don't have spares and would be unable to drive etc. without wearing one.

Anyhow recently changed jobs/locations and moved from Moorfields outreach in south London to Moorfields outreach in bedford. My new consultant, although very brief! Did suggest I research epi-on CXL as a relatviely risk-free option and he's seen better contact lens fitments post treatment - ideal if it stops the left lens popping out.

Could anyone advise UK clinics that perform epi-on crosslinking? Is there any data that shows success rates for comparisons? From my limited research (up untill now I purposely ignored the condition and let the "experts" treat as they felt neccisiraly - didn't want the stress!) I've learnt that the type of solution used with epi-on crosslinking is key and that if it's too thick, won't penetrate - so I'd want to know that whoever offers it, uses the right type of solution! I'm also hoping that my left eye is still OK for this treatment, as they is slight scarring and I guess as it's further along the cornea is thinner than in my right (which would be OK for this procedure).

I'll need to go private as moorfields would only consider this if the condition is getting worse, and they monitor annually and there has been no signifcant changes in last 3 years - that'll be March's bonus used up! But for a potnetial to halt progression and improve contact lens fit the £3k-£4k investment for both eyes would be worth it (me assuming costs here).

Cheers

Jake

Hi Jake and welcome to the forum,
I'm afraid I don't know whether any of the private clinics do epi-on CXL. As you say, the standard riboflavin drops that are used don't penetrate very well. I know Moorfields is working with UCL to try to modify the drops, with a view to then doing a clinical trial of epi on, but I don't know how far they've got with that (their initial attempt to get funding for the trial last year was unsuccessful). And of course, you might not be eligible for any clinical trial if your KC is stable. So I guess it's a question of ringing round various clinics and asking them what they do.
Alternatively, can the fit of your rgps be improved to prevent the lens from popping out? And if not, would one of the other contact lens designs work better for you?
Anne

Thanks Anne,

I may have to start calling around then! To me it seems exessive to travel to the USA for treatment and I'd personally not feel comfortable with treatment outside the UK/USA.

What other types of lenses are there? I wasn't aware of other options apart from soft lens and RGP lens. Over the last fews years I've had a couple different types of RGP lenses and do think the one's I've got currently offer the best vision, but this is something I'll ask at my contact lens appointment scheduled in 3 months time.

There are hybrid lenses - hard centre and soft skirt, also mini and semi sclerals and the full sclerals (the ones that cover the whole of the eye). And some people wear a soft lens underneath a rgp lens - a system known as piggybacking. If you'd like more info on the various options for KC, do e-mail me your postal address and I can send you some.
Good luck
Anne (anne@keratoconus-group.org.uk)

Jake,

You sound a bit similar to me. As a spectator why the rush?

Firstly, if not the lenses Anne suggested perhaps piggybacking (soft then hard on top) might help? For me was much nicer than RGP only. Though I'm not at the stage where even that isn't great.

Secondly, why epi-on? At one point I was really looking to get this but since (like you) I was looking for a better fit contact in my bad eye I don't use much I've come to the conclusion that epi-off though it has a longer recovery has more predictable results. Though epi-on in the future might prove to be as good or better than epi-on I'd go as far as to say it's not there yet, aside from the recovery time. For me epi-off seems to, currently, have demonstrably better results (and longer result history, obviously).

Also in the background there was a NICE consultation on provision of epi-off on the NHS(might be free). Though it was targeted specifically at halting progression I submitted a query about exactly our situation, i.e. improving chances of getting a successful contact lens fit.

Thanks for the replies

The rush is because I hadn't reasearched into my condition before and I (fortunately) have the money to pay privately if needed, and I generally don't like to hang around with this things. I'm consdiering it not just for contact lens fit, but for greater assurance that it won't get worse.

My prescription in my better eye did change about a year/2 years ago - so not 100% stable (only a minor adjustment, but still). Essentially I'm nervous about it getting worse, and as I am happy with my current level of vision feel the investment in crosslinking is well worth the money if I can gain greater assurance that it won't get worse.

I'm favouring epi-on as apose epi-off because the largely reduced risk of complications and also the recovery time, I'm got a good career and have recently started with a new company, I really don't want time off from work (one of the reasons I've just left it as is up untill now). With epi-on I should be able to just take a week holiday and have the procedure and a contact lens appointment for a new lens prescription (if needed) then be back to work. Without lenses I can't drive/use a computer/watch TV etc. etc. (even with just 1 in as the other distorts the vission) so I literally am housebound without wearing lenses, therefore to have an epi-off procedure would mean alot of time off work and sitting around at home.

The other reason is I've bene told that there may be a potential to redcue the amount of light scatter I experience (clearly not guarenteed - either due to a better lens fit and/or the results of the crosslinking). Lastly, my new consultant has said that he's seen improvements from epi-on with patients he's treated (lens fit and/or vision).

The first stage is to just identify who actually offers this procedure in the UK as that in itself is a challenge!