UK Keratoconus Self-Help and Support Association

Have been trying not to bore you all with the continuing saga of getting used to my RGP as it isn't going very well (unless you can tell me otherwise!). Some general questions....and any help with the answers will be very much appreciated!

I've managed (with the new one) to wear it for just short of 6 hours today - but it isn't what I would describe as "comfortable" at all. Just about tolerable. And I am conscious of it all the time - watery eye, dry, sometimes slightly sore. And most days I can't manage more than about 3-4 hours at most. .Is that normal at this stage? Is that the best it will get?

Why do I find that some days it feels like glass shards in my eye and no matter how many times I take it out clean it and put it back it is still the same? So I give up.

Do I need to use protein remover tablets? Moorfields never mentioned anything about them, but I read somewhere that you should use them once a week. I am using the Boston set at the moment (separate cleaner, saline, conditioner/wetting solutions)

I can still see the edge of the lens. There's been absolutely no change to that, and was a problem I had with the first lens too. As a result I can see "better" with my soft lens for driving than with the RGP but still can't drive at night at all. I don't even feel safe driving with my RGP in during the day as the peripheral vision is so distorted.

I'm heeding all the general advice - drinking lots of water (and peeing a lot as a consequence!), I have a healthy diet (always have had - well for the last 20 years anyway!) and using lubricating drops (systane and/or celluvisc) as advised by Moorfields. I've tried using "blink" and "refresh contacts" but both of these end up leaving a residue on my lens.

I generally don't feel as if I am making a lot of progress. I'm due back at the CL clinic on 26th, when I am hoping (or dreading???) to try a lens for the other eye - but am scared that if I can't get used to it in the one eye first then what chance is there for the other. And until I get them both sorted I can't get any useful specs for reading (which I have to wear as well on top of my lenses)

So today I'm feeling a bit fed up and really rather down.

Hi Pat,

I'm sorry that you are taking time to get used to your new lens.

It may be that the fit is not still not optimised. It can take several attempts to find the perfect lens - even from the experts. It is often said that fitting KC eyes is as much an art as a science.

Is 3 or 4 hours normal? I would have thought that if the lens fit was optimised you'd be getting 10 hours +. I remember a few years ago I was having a refit - my old lens was worn out and wearable 15+ hours - but the new one was just not right and annoying me after a couple of hours. It took 4 or 5 lenses before a suitable new lens was found for me.

Your eye shouldn't feel sore. Have you got something trapped behind the lens? If you've scratched the cornea try leaving the lens out for a couple of days that might help.

Similarly you shouldn't be able to feel your lens (unless of course you've something trapped behind it - then I agree it can be extremely painful).

Protein remover tablets - I personally only use them occasionally. Some cleaners are better than others at preventing protein build-up on the lenses. In my experience separate cleaners are better at doing this than the all-in-one solutions. If Moorfields' spot a protein build up on the lens they will probably suggest you use them at your next appointment.

Do mention that you can see the edge of the lens - it may be that you need a slightly larger diameter. I once had a lens that I was aware of the edge - light radiated out to my perpheral vision. It was said that if I'd only worn glassed before and not lenses I wouldn't have noticed the problem!

I've never managed to successful use rewetting drops while wearing my lenses - the drops seem to end up every where apart from my eye! As you are only wearing them for 3 or 4 hours I'm surprised that you need to rewet them. I find that it is better to put my lenses in about 3/4 hour or so after I've got up so that my eyes are truly awake. I find that they are more likely to dry out if I bung them in as soon as I open my eyes.

As for the other eye - it will be a different story. KC tends to affect each eye differently so the two lenses will probably different in design etc.

Do keep making notes of your progress for Moorfields. Do wear your lens to the appointment - ideally put your lens in three hours or so before your appointment so that they can see the lens at your maximum wear.

I do hope you are having a better day today. Any more questions - DO ASK. You are not boring us. I've been there - the feeling of hope when the lens lands on the door mat - and despair when it doesn't work.

Lia

As

I'm sorry to hear you are still struggling.

I can only think the fit is still not right. Certainly my last two right lenses have not been that comfortable but nothing like as bad as yours by the sound of it.

As far as I am aware protein tablets don't prevent build but remove it.

I periodically have to soak my lenses in a protein removal solution, otherwise my eyes become very sore.

I also wonder whether your eye is allergic to Boston solutions and perhaps other solutions may be better for you.

Thanks guys - all of what you have both said is helpful, and in a bizarre way, quite reassuring! Doesn't help with the actual comfort of the lens of course, but does help my psyche (goodness knows if that's how you spell it!) 'cos it tells me I'm not a total wimp! But the despair hasn't totally gone away yet.........

Had a further bad day today where I have given up after 4 attempts to wear it - see what tomorrow brings.

It's a tricky one with the solutions - how can i actually tell whether I am sensitive to the solutions other than spending a fortune on something different and see whether that makes a diference! And what should I try? (Especially as I bought a 3 month pack of Boston stuff originally!)

And of course I also have the soft lens in the other eye - that's a completely different set of solutions too.......my bathroom looks like an optoms display!

Pat,

Some peopel produce more protein than others when reacting to lenses, I do and need to use protein removal tablets. Without them I get the gritty feeling you describe, so give them ago. I use the Bausch and Lobones, but the boots ones are good too. I leave them in the protein remover for as long as the instructions allow, or the time I can spare. Then leave in the conditioning solution overnight.

15 hours lens wear is a bit excessive for a KC eye and leaves your prone to a bad eye day and causing later problems.

8 to 12 hours is more the norm, and this took the longest for me. A couple of weeks I was at 8 hours, but then I had to spend a week at 8 hours before I could try 9 and so on.

In the first instance I would say back off to what is tolerable such as 4 to 6 hours and see how that goes. It is easier for me to go into more detail if you call me or if we have a chat at the AGM

May or not have my lenses in, depends how brave I am, last time I wore thenm for a KC doo (last week), a car drove into the back of me when I stopped behind a que of cars at the traffic lights

As for the edge of the lens, I get that in part due to the extent of the KC, but as I got more used to the lenses and could ignore the fact they were in because of other things I was doing I have learnt to ignore it without any loss of vision.

Hope this helps.

Gareth

Pat,
I think you are really perservering and I admire that. I would have thought you would be up at more than 3-4 hours but everyone is different. I think like the others have said there could be a fit problem.
Matt

Pat

At one time I used to put my RGP's into a protein soak twice a week. For some reason my eyes were producing more protein at that time than at others. I suspect it was due to diet, because it did not last long. But I have no idea what I was eating or drinking that was different then to the rest of my time.

All the best

Andrew

Pat,

Hey there. Sorry to read that you are having so many problems with the RGP. Have they suggested a piggy back system where you have a plain soft lens underneath? This would certainly help if you get on ok with the soft lens in the other eye.

We can all react differently to contact lens solutions, but i think that you would notice it quicker than you are. This makes me think that it is more a lens fitting rather than a protein problem or solution reaction. If your lens is totally clean and you wash your hands before you insert it but still get such bad pain that it 'feels like glass' that is a fitting problem. A solution reaction is normally more subtle and can give you redness, itching watering etc and makes you want to rub your eye. You sound like you are in real pain because you can feel the edge of your lens!

I do hope that you can work something out. I piggy back with my right eye really well and wouldn't be able to wear this RGP if i didn't have a soft lens underneath. You are more than welcome to pm me if you need to talk about it anytime!

Take care.

Pat,

I would agree with Sweet that it is probably not a solution problem - unless of course you are getting some cleaner in your eye. This is very painful!

Ideally you should clean lenses after use, rinse in saline, and store in fresh solution. Before wearing a lens remove it from the storage case and add another drop or two and put in your eye. The alternative method of storing in fresh solution and cleaning before wear is not recommended as there is a danger that some of the cleaner is still on your hands and gets on the lens and into the eye. OUCH! Hence if you are removing your lens during the day to clean it you could be getting cleaner in your eye which will make it water and be sore.

Just a thought - as I managed to do it yesterday!

Lia

hi pat
from my own experience of rgp lenses and fits that you would need an abacus to count, it sounds like a fit problem.
if your eyes are drying out that fast that you need to constantly re-wet them it sounds like it might be tight on your eye. what this means is that your own tears and oxygen arent able to get under the edge of the lens so causing it to dry quickly and can cause a slight burning sesation which could be the discomfort you are feeling.
i have the same problem with re-wetting solution as in that if i try and apply them with the lens in i end up having a shower , i find it easier to remove my lens and apply the wetting solution to it direct
hope things improve for you, keep on keeping on
mike