UK Keratoconus Self-Help and Support Association

Hi,

Been trying to work this one out in my head for the last few days. Sorry if it turns out to be a long read, need to explain the history!!

I have KC (woohoo!) and through a need to buy our first house rather than a garden shed with my savings/salary, I moved with my partner from Sussex to Leicestershire. The move has gone great and we're very happy.

In Sussex I was under the care of Sussex Eye Hospital and their contact lens department (top marks by the way, they are all very friendly there) and when I last saw them around this time last year we'd kind of exhausted a lot of the options open to me. I'd been through soft lenses, RGP's, piggy backs, RGPs with holes, diner lenses from the US - you name, i'd tried it.

The best lenses however, the ones I'm still in today are SoftPerms. Everytime an optometrist hears that they go oooh, dont wear them for too long, but for me they are the most comfortable. As Brighton put it, my eyes seem to prefer lenses that dont slip around - but stick in place as much as possible. If lenses do slip, my eyes seem to get very sore very quickly.

Anyway, towards the end of my treatment at Brighton I was fitted with (how big!) full sized sclerals. Despite the fact I was very happy in my SoftPerm lenses Brighton wanted to try me in the Sclerals as they were unhappy with the negative effects of the SoftPerm lenses.

I perservered with the sclerals, including the get yourself soaked way of putting them in with the saline solution but despite how much I tried, the effect was that my vision was poor and cloudy. The running joke with all my lenses is that the only ones that look bad in my eyes, the soft perms, are the ones that I feel most comfy with.

Brighton at this point referred me to Ken Pullum privately in Hertford. I went and saw him and he agreed that the Sclerals were not working for me and that although the SoftPerms werent great, at that time they werent doing any damage either (I have been warned about vessels entering the cornea).

At this point Ken suggested I tried mini sclerals and offered to take me privately - something I couldnt afford to do what with recently moving and having to redecorate every room in the house! He did suggest though trying to get referred to him and he would help me from Moorfields.

So the last official KC check I had was in May of last year (with Ken P). Since then I've been getting on great with my soft perms until just after Christmas when my eyes started drying out. A visit to the local doctor, and then the eye casualty suggested that my eyes were very dry and I should leave the lenses out for a while (turned out to be 3 weeks in total).

In addition, after some painful swabs, the casualty department ruled out all infection (I think they were surprised by this to be honest) - the eyes are/were just very dry.

I now have the lenses back in (tried the right for a few days on its own, and now the left is in too) but at night my eyes are very dry and I am having to use drops overnight and some during the day with the lenses in. I have not experienced dryness like this before.

I have since been sent a referal to the hospitals eye department to check out my KC. The appointment is for mid April (the 12th). I have checked out the consultant and he works both from this hospital and privately. One of his specialties is KC.

Obviously I am concerned about my eyes because they are so dry and at times, because of the dryness, painful (although vision with the lenses in is good).

Would you (after kicking yourself for not getting your KC checkups up-to-date):

a) Wait until April.
b) Go and see the consultant privately (prob +/- £100) to make sure things are good and can wait til April.
c) Go to your doctor and pester him to refer you to Ken at Moorfields
d) Stick head in the sand.

Thanks all. Sorry for the long post.

Eddie

My question before answering yours is

What treatment have you had for dry eyes?


I work two juntions up from you on the M1 going north, but live three junctions south of you on the M1 south

Hi Gareth,

On visit to the doctor (week 1)
- Optrex Conjunctivitis Treatment

On visit to the hospital (week 2)
- Hourly drops of celuvisc
- Nightly use of Lacri-lube

On 2nd visit to hospital (week 3)
- Hourly drops of celuvisc
- Nightly use of Lacri-lube
- Was also prescribed Hyco-san drops (sodium hyaluronate 0.1%) to use instead of celuvisc if I prefered - I also use this now my lenses are back in

Ed

PS. I should add that I am also now starting and ending my day with Systane
PPS. Junction 21 isnt a junction! Its a big collection of workmen and traffic jams!

I wear a Softperm in one eye and also suffer from dry eyes.

Since I can no longer wear RGPs, my Drs. have had no problems with me wearing my Softperm all day (14-16 hours) so long as I do not show abnormal blood vessel growth into the cornea (the primary symptom of oxygen starvation due to the lens). I have not had any adverse reactions to the Softperm except even more dryness.

I also had pretty severe dry eyes to start with and have also had (and still use) the following procedures to help keep my eyes hydrated:

1. Plugs in my lower tear ducts
2. Cauterized upper tear ducts (plugs kept falling out)
3. Minocycline to treat Blepharitis (inflamation of the eyelids)
4. Resatasis (cyclosporine) drops twice a day (also an anti inflammatory).
5. Rewetting drops as needed (probably 1-2 times per hour depending on how dry my environment).

I am hoping to be fit with a Synergeyes lens next week to replace the Softperm (also a hybrid lens but with better oxygen permeability), though the Softperm is treating me pretty well after a year's use.

If you can get some decent treatment for your dry eyes, I'd suggest sticking with the Softperm.

Hi Eddie,

I found initialy systane morning and night did not work.

I had to start with it every couple hours for about a month for it to have an effect. Over the next couple of months I started to back it off. If I did so too quick the problems came back and I had to take a couple steps back regarding frequency of drops.

This helped to get up to 4 - 6 hours wear. The regular 12 plus did not come until I had been drinking at least 2 litres of water per day for a month or two instead of countless amounts of coffee or fruit juice.

No fruit juice at all now, just the whole fruit. Still have the odd glass of wine or beer as a treat but this was never a regular theng before hand.

For good lens wear to become a regular thing which I mean good vision and comfort took about six months.

The stuff I had from the doctor was similar to what you had, but a few days after being off it I was back to square one. It did not fix the casue, just the symptoms.

Systane to be fair does pretty much the same thing treats the symptoms but in a more user friendly way.

To the best of my knowledge there is not a treatment that will make my eyes produce the tear component it is lacking so blocking or opening tear ducts just aint gonna work for me.

It was a long process, but well worth the patience in the end.

Oh and Junction 21 a collection of workman and traffic jams!

I find outside lane, head lights on in a silver car that has 999 on the registration and flashing the headlights at a constant frequencey from a distanceas I approach cars; everyone soon clears out

I have had this problem at times to the point where I stoodin the shower for half an hour as soon as I put my lenses in.

ThingsI have done :-

I have eye drops in every place I go work home horse.

I have a humidifier at home and at work

I always weartinted glasses out of doorsto prevent dryness.

I chew airwaves gum to keep everything clear.

I reduce my caffeine intake whenever i have a bout of dryness.

I eat lots of fruit and veg.

These suggestionsare not clinical but they do seem to make a diffrence. Also I use AOSEPT to soak overnight and clean with Miraflow once a fortnight . If your lenses build upprotein deposits it can gave a hell of an effect

Hi KCers!

Just to let you know i'm now back to normal with my eyes - they are still a little dry (hey, I wear lenses!) but nowhere near as bad as they were this time last month.

I think I've decided that I must have had a bug or something because not only did I have dry eyes but a slightly sore throat and a deeper thirst than usual.

I can recommend systane to non-users tho - before and after putting lenses in.

I also found more recently that rinsing my lenses (SoftPerms) in Saline solution before putting them in (even though they had been rinsed in rinsing solution) helped a lot - I use the Bausch & Lomb sensitive saline if that helps anyone.

I would also recommend getting a cheap hygrometer (something that measures humidity in the air) to check the air around you - I found one on ebay for £1.50 (!!) and I have it sat on my desk to act as a warning should the air get dry (its not always easy to tell).

If it helps (hey it might!) I've also written a little bit of code that pops up on your screen and flashes 'Eye Drops' in your face - using the windows scheduler I had it popping up every hour. If that is of any use to anyone (I could change it to say "walk around the office!") give me a shout and I'll see what I can do.

Hope everyone is ok and had a good weekend.

Interesting to read all this as I am collecting my Jack Allen Softperm lenses this Thursday (always used RGPs before).

Is it common to be suffereing from such dry eye problems as described with softperm lenses?

I dont know if it is common to get dry eye with these lenses but is is well worth keeping a bottle of eye drops handy. The lenses can dry out a little on your eye in the wrong conditions.

Just a reminder that probably everyone knows if you put eye drops in keep your eye shut for a few seconds putting them in and then blinking actually washes them away.

My dry eyes are worse if I have a cold, but glad to hear things are much improved.