New Member Looking for Advice

[Grifteruk]

HI Everyone i'm a new member to the site, although not new to KC.

I have had KC for over 7 years. Through this entire time have had standard GP lenses, which i have coped with fairly well. I have tried Kerasofts but they cant match my needs. My vision with the hard lenses is very good (without them its shocking!) and at present i normally manage a full day's wear staring at a PC, with the occassional need for a soft lens bandage. I even manage to wear my hard lenses for football with a soft lens over the top!! (although it may not be the best idea).

However i have today seen a specialist who has given me a lot to think about. Whilst i thought my condition was moderate he has said i am closer to the severe end of his scale. Various comment about the thickness of my cornea make INTACTS a doubt if things get worse and the thought of a transplant is a frightening proposition.

I know that i may not be the worst affected by KC but the news came as a bit of a blow today, hence the frantic search online for some more info. What i've seen so far on the forum has helped a lot and its great to know that i'm not alone, but there are a few queries i have from the entries which i would love to have some feedback on:

1. I have seen reference to the NHS funding (or a contribution) for GP lenses. IS this right as so far i thought that i'd always have to pay for them without any assistance?
2. Recently i've been struggling with "comfort drops" and am wondering if there are any recommendations for different types of solution for dry/sore eyes whilst wearing the lenses that i could try?
3. Corneal Collagen Cross Linking has been mentioned today and i have looked it up a lot. it seems to be fairly positive but i am wondering about the potential cost and whether there are any real negatives. I am also worried about possible side effects that may make wearing my current GP lenses worse after having this done?
4. I am wondering if anyone has any direct experience of hard lenses with a large diamater iris/eye. Mine is apparently huge as i cant wear smaller than a 9mm hard lens and had terrible flare with RoseK lenses some years ago. Anyone managed to find any type of hard lens which is specifically for KC in a larger diamater?

Any help or advice would be a massive help and very much appreicated. I am sure that i may have my own helpful little hints to pass around.

Many Thanks

[Anne Klepacz]

Hi Grifteruk and welcome to the forum!
1) Yes, if you get your lenses through the hospital eye service, then you are eligible to get them at NHS rates (currently £50.50 per lens). If the hospital has its own contact lens clinic, then they can supply the lenses and charge you the NHS rate. Hospitals that don't have their own contact lens department give their patients a voucher which can be taken to an optometrist who deals with KC (often the hospital will have someone they use regularly for this) and again you pay the NHS rate.
2) Staring at a PC at work all day probably doesn't help your dry eyes. Do make sure you take regular breaks from the screen during the day. Some people have managed to get a humidifier to help get some moisture in the air around them, others surround themselves with plants or bowls of water! (Have a look at the Working with Keratoconus leaflet on the home page for ideas). And there are a variety of drops out there - I don't know which ones you're using, but there's Blink and Refresh which both come in contact lens versions that you can put in without taking the lenses out. And a number of people on the forum find Systane helpful (if you do a search on Systane, you'll find quite a few posts.
3) Again, if you search this forum for Intacs and Collagen Crosslinking or C3R, you'll find a quite a few posts from people who have had one or other of these procedures. As with any KC option, what works for one person isn't necessarily a solution for someone else, no procedure is entirely risk free, and not all KC eyes are suitable for the different options. But at least we do have more choices these days!
4) You mention large diameter lenses, but have you ever tried scleral lenses? They are the ones that cover the whole of the eye, and some people find them a lot more comfortable than rgps, even if they do look a bit daunting at first!
And finally, our last conference in June included talks on all the different contact lens options as well as on Intacs and C3R. We will be producing a DVD of the conference to be sent out to all our postal mailing list members in a few months time. So if you'd like to receive that do PM me or e-mail me (anne@keratoconus-group.org.uk) with your postal address so that you're on the list.
Anne

[Grifteruk]

Thanks for the tips - and for the welcome

I'll give those drops a try and see how it goes. As for getting off the computer and plants i'll have to ask my boss!! Only kidding i do try to break the day up a bit wherever possible.

C3R does sound attractive but i suppose its a question of weighing up the benefit against the risks. As i can see with my lenses at 6/6 or 6/5 (without i'm worse than 6/60) some people i've asked say not worth the risk, but if my KC is getting worse, whicih it is in the last 2 years, should i try and slow it down now or not???

Plenty to think about all round but thanks for the advice

[Andrew MacLean]

Grifteruk

Welcome to the forum!

I don't have much to add to what Anne has said. It is good to know that you found help here.

I use hypermelose drops, but before you use any drops with your lenses ask your practitioner.

I wore a scleral (sometimes called a 'haptic') lens. For me, at the time, it was absolutely ideal, and thanks to the help from the NHS for lenses I got it for £45

Andrew

[Grifteruk]

Thanks for that - i've been hearing quite a bit about scleral lenses. Hopefully i wont need to change but if i do they'll be on the list to consider.

I have heard from a few people that they can be more uncomfortable than standard GP's but on the forum lots of people seem to cope fine with them? someone also told me that they are not as good for your eyes as standard GP's which put me off a bit.

I know that if it gets to it i'll speak to my optician/specialist about it but does anyone have any views?

Thanks

[Andrew MacLean]

I found my scleral to be the most comfortable lens I ever had, in part because the problem of dust getting in my eye was completely removed by the large lens.

The thing you learn about lenses for KC is that each of us is different from the rest; if one solution would git us all then there would not be the current varitey of lenses and lens materials available!

Whatever will suit you, I hope that you find it soon and that you are able to report a good fit well and comfortably achieved!

Yours aye

Andrew

[pip]

Dear Grifter!

I have had keratoconus since my mid 20's, I am now 45. I realised that there was something not quite right with my eyes when I returned to study. I was squinting to be able to read the blackboard, I was taking much longer to copy notes etc... At first the kereteconus was not picked up by an optician and spectacles were prescribed, on wearing the said specs my eyes found it even harder and they made me feel dizzy and sick. I returned to the opticians, fortunately for me the optician that had seen me was off that day so I was seen by a different one. He picked up on the keratoconus, I was referred to the hospital. I live in Scotland and it has been my experience that if you are a hospital patient, even being seen by a private practice, you do not pay for your contact lenses, I have never paid for mine, up until now I have had GPL, Hybrid, and soft lenses. I am not very good with the lenses, so I usually wear glasses which I do have to pay for.

I find it hard to wear the lenses as my eyes always seem to be itchy, the lenses also pop out when I blink. I do have much better sight with the lenses, but it's such a bother if one pops out and you can't find it, then you have to re-order and this can take a while especially when I used the hybrids (I think that's what there called, small hard lens on the inside and soft round the edge) I had a bad experience with them, I couldn't get one lens out, it had gone round the side of my eye, eventually I managed to get hold of the edge, but then it tore away from the hard bit , what a nightmare!

If anyone else reads this and has some ideas for me please reply. My eyes are always itchy, I suffer from allergies and dry skin (eczema), my eyes water constantly, it looks like I'm always crying!
The doctor has given me cream for round my eyes, I later explained that it's not the skin round my eyes that is itchy by the pink bit the touches together when you close your eyes, (women sometimes put eyeliner here) so I got two types of eye drops: viscotears for night and liquifilm tears for during the day. I have been using these for months now and I have just discovered that I have an infection in 1 of my eyes.
Does this every get better? Why can I not put up with the contact lenses. Why do my eyes itch so much? My husband says that when I rub my eyes it makes him feel ill!

[GarethB]

Grifter,

HSE guidelines recomend frquent short breaks from VDU use. Changing the VDU settings can really help eye comfort too.

Remember that we all react differnt to eye drops and lenses, so be prepared to have to try many types, but give them a week or two to take effect before trying another. I found most took a couple days or more before the benefits were noticed.

I have found substituting coffee, tea, fizzy drinks with just plane water has made a big impact on my lesn comfort too.

Give Anne Klepatz your contact details and she will send out all sorts of useful materials.

When I was having lenses fitted, I asked if a larger lens was better, we found that for one eye a smaller lens was best.

Be prepared for contradictions because all we are doing is sharing experiences and what works for one may be completely unsuitable for another. All we can do is try and more often than not we find taking slected aspects of other experiences is what really works.

[Grifteruk]

Cheers for the helpful tips. Water is my beverage of choice (at least in work) already!

Pip - I find that if i rub my eyes they just itch more and then your into a vicious circle. My girlfriend goes mad when i rub my eyes because she knows that i've been told not to and because she knows that i'm just making them itch even more. I know its hard not to rub but it does make it worse.

Good news yesterday my optician checked me over and said he's pretty sure he can predict the way my changes are going. Bad news i'm always changin but good news if he knows pretty much what's gonna happen!

Fingers crossed it stays that way