Hello Everyone

[GraemeH]

Hello Everyone.

Just thought I'd Introduce myself to you all.
I was recently diagnosed with KC (end of Jan this year) and since then I've been lurking around this forum but keeping quiet, reading up as much as I can about KC. I think this is a great forum and has made me appreciate that there are a lot worse than me out there - an important lesson for me during those early days...

I've had plenty of time to get used to distorted vision though - I think I've had KC for over 10 years now (I first noticed flaring and distortion in 1994). After the initial onset it seemed to stabilise until the last 18 months or so where I think it's been on the march again - albeit slowly. The vision my right eye the optom describes as "normal" (though it doesn't seem that way to me), but the left is worse.

I've recently gone for RGP lenses for both eyes (as the specs aren't up to the job anymore). I got them 2 days ago - they are the Rose K lenses apparently - and it's fair to say they are (so far) a right pain in the.....eyes!
I was recommended to try 3 hours wear initially and build up by adding 1/2 an hour a day. So far I've managed 2.5 hours on day 1 and 1hr 40mins on day 2 before needing to get them out.

When I first put them in my vision is great, but after an hour or so it begins to deteriorate, the lenses start to irritate seriously, and when I get them out they're as dry as bones. Not only that but once they're out my vision
with specs is much worse than before the lenses went in (although that seems to settle down over a couple of hours).

I know it's early days (and I'm not giving up that easily), but does anyone have any hints/tips/similar experiences from those first few days of RGP lens wearing?
In particular:
* Did I overdo it on day 1 despite what the optom said?
* Could I be doing something horribly wrong?
* Am I expecting too much too soon?
All comments gratefully received.

best wishes everyone
Graeme

[jayuk]

Hi

This will sound the most bizarre tip you will ever read and id doubt anyone has done this or tried..but sweat before you put the RGP in.....

LOL..I kid you not.......Maybe Lynn or someone may have more info on body temp and cornea shape etc...but what I found to be a fail safe way of getting used to lenses was to sweat when you get up and put the lenses in..

I found this out by coincidence many years ago....Id get on my treadmill first thing in the morning for 30 mins with my lenses and after that my lenses would not play up at all..

I had similar probles as you say......when after a short period my eyes would hurt.....even to this day I use this method when I have lenses...but not as much of recent as I have sclerals....

Im sure there are other tips for wearing in time....but i thought Id share this one.....try it and see what happens..you have nothing to lose.

But what you say is common......and happens to all of us...worse case scenario is a bad len fit.......and I think youll know this after the 10 day mark.....as if the problem still persists in the same timeframe..than more than likely its the lens fit

[Lynn White]

Hi Graeme...

Welcome to the forum!

As an optometrist, my first instinct is to say contact your fitter. That is the person who knows what your fit is like and whether your problems are expected or not.

From trying to second guess without seeing you - it is possible you are getting symptoms of reduced oxygen in the cornea or dry eyes or possibly both.

A quick check by your optom when you have had the lenses in for about 2 hours would tell if either of these problems is present.

The blurring of vision with spectacles after removalis often experienced with RGP's becasue the rigid material moulds the cornea and changes its shape, thus changing the prescription. This happens with non-KC people as well, though not as much as they do not have a "cone" that gets pushed back during wear.

Keep me posted!

Lynn

[GarethB]

Lynn, you did not mention Systane

Hi Graem,

My lenses were a right pain when I first got them and I found that I had to get the right combination of solutions. Although they all appear to be the same, the storage solutions vary slightly s do the cleaners and saline solutions.

In the first instance, I would say perservere becaus as you get used to putting lenses in and out this can help. Remember putting a foreign object into your eye is not natural so your eye has to get used to this. It is very frustrating at first, but well worth the wait.

You are probably doing all the right things as you would not be allowed home with the lenses unless the the optom was happy you coulduse them correctly. I had gone nearly 10 years without lenses, but for the hospitals peace of mind they insisted I demonstrated that I could look after the lenses before being able to take them home. I had to put both in and out three times and due to the eye irritation and letting it settle after putting them in and then taking them out the nurse was with me for about six hours! It was really good of the hospital to allow this 1:1 and I think they knew how important it was to me to be able to go home with the lenses that day.

Six months on, lens wear is a lot more comfortable but for me the getting from 4 - 8 hours was a real struggle. We are all different so just set your goal and take it one step ata time. If you have to start at 30 mins for a couple of days and then increase the time then so be it. The goal is an acceptable and safe wear time which cant take time. All KC sufferers are probably guilty of over wearing lenses and suffering as a result at some time.

You usually have to go for a check up about 4 weeks after getting the lenses, so if you are still having trouble that is the time to tell them. It can take several fittings before the correct shape of lens is found due to the nature of KC.

Hang in there and it will al come right for you.

[GraemeH]

Thanks for the comments and suggestions everyone.

I had a good day yesterday, kept them in for 2hrs 20mins (and went for a walk in them too1) but today I only managed 1 hour.

One thing I have noticed is that the lenses really slide around the cornea, often moving downwards so I'm looking through the uppermost part of the lens not it's centre. This I think is why the vision swims in and out causes flaring to still be seen, esp. on the uppermost edges of objects. Are they supposed to slide about like this or is the fit too loose?

I also think the myopia component isn't right either, especially with the right eye. Still, KC lens fitting is always a bit of a trial and error process isn't it...?

[GarethB]

Graem, my lenses move about but not to the extent your appear too. Howvere before the inventio of the Rose K style lens they did. However your eye may still be generating a lot of tears as it gets used to the lens which is providing a layer for the lens to move on.

If you are concenrned, best call/ask the optom as in some cases I have heard it can take several fittings get the shape right. I have found them to be most helpfull.

Gareth

Glad to hear you mananging to get some wear time now.

[shoayb]

Hi Graeme,
Welcome to the forum... I guess we are quite similar in terms of KC..
I hjust given back my First pair of lenses for some adjustments... I got them 3 weeks ago and managed 2 Hours wear time on the first day till i was almost ripping my hair out!
after which for the next week or so managed a maximum of 1hr45m.. averaging 45 mins each day!
Went back to my optom who has sent them off for adjustments!
Hang in there mate... and DO call your optom to get them checked out!
I'm currently on some Hybrid RGP lenses.
Lynn/anyone - my optom suggests a new Lens coming in from america(Almost approved by some professional body here in uk?!).. has a soft-lens outer but RGP centre?!?! it's called.... (something i've been trying to remember now for 30 mins.. but no luck!) ill post as soon as i remmeber!

[jayuk]

Shoayb

Are they Soft Perms? There were very common in the states and kind of known here in the U but many Optoms never recommended them here.....I used them for around 2 years when I had mild / medim KC and there comfort was fantastic.......second after Sclerals.....but bear in mind that you need this correctly.

Also, a concern back around 4 years ago with these lenses was the oxygen uptake within the eye..however I suspect that as now been addressed..........

[shoayb]

SYNERGISE!!!! thats the name!
Jay, i don;t think they are soft-perms as such! from what i understood (Which could be wrong!), they are RGP's but have a much 'Softer' material round the edges!
now... i will get some technical details asap..
From the way my optom was talking.. going to revolutionise KC!(We all wish eh!) apparently the comfort is very good.. and they are making many fittings for KC specifically!
see how it goes i guess..!