UK Keratoconus Self-Help and Support Association

Hi all,

I've had Keratoconus for nearly 30 years now. I've tried different flavours of contact lenses over the years and had given up with them as I was unable to tolerate them. However, during a recent eye test the optician mentioned what I think are Kerasoft lenses. I searched this on the forum and could see that many of the members have tried them but I could not find teh exact answers I was looking for. Please can anyone with experience of these let me know the following;

1) Can you get these fitted via the NHS? If yes, has anyone used Gartnavel or other hospital in Glasgow?
2) If you can't get them on the NHS, where have you had them fitted in Glasgow and how much did they cost?
3) Is there the usual mixed bag of people that can tolerate them and those that can't. I'm particularly sensitive to lenses and I'm keen to understand if these are something different before spending too much money and time on them.
4) I've read on this forum that some people have had problems with them rotating and blurring vision or that they have had to have them re-made. Is this a common problem with them?
5) Are there similar options from another company? My knowledge of the available contact lens solutions is now well over 5 years old, so I'm keen to find out more current information.

Regards,

Ian.

Ian

I have had soft lenses offered at Gartnavel. I am not sure whether they were the lenses in which you are interested. As it happens, I was not able to tolerate the soft lenses; I do know, however, that others have tried them and get good results.

I have sent a pm with details of a private sector optometrist who might be able to help, if the hospital can't.

Andrew

ps welcome to the forum

1) Can you get these fitted via the NHS? If yes, has anyone used Gartnavel or other hospital in Glasgow? Yes, there are a couple of people withing the Scotish local KC group that have had these fitted on the NHS at Gartnavel.

2) If you can't get them on the NHS, where have you had them fitted in Glasgow and how much did they cost? If you choose to go private, on the KC Group web site is a list of KC friendly optomostrists and if that was of no help, the manufacturers may be able to provide a list of people in the Glasgow area that fit them.

3) Is there the usual mixed bag of people that can tolerate them and those that can't. I'm particularly sensitive to lenses and I'm keen to understand if these are something different before spending too much money and time on them. As with all lenses there is no lens that suits everyone. That said as a Kerasoft IC user for many years and having attended many contact lens fitting workshops to educate the next genration of optometrists most people going for the soft lenses are those who can no longer tolerate RGP lenses. To date I have yet to encounter anyone who is unable to tolerate soft lenses due to comfort, the fact these lenses are so comfortable is something most people comment on and I have encountered many who have tried these for the first time straigh after removing their GP lenses and have asked if the lens was actually put in their eye! They couln't tell they had a lens in until the over refraction started.

4) I've read on this forum that some people have had problems with them rotating and blurring vision or that they have had to have them re-made. Is this a common problem with them? As far as I am aware this is only a common problem if the lenses are fitted incorrectly. I have met a few people with this problem, but once the lens fit was corrected, there were no further issues. Rotating and bluring vision is a symptom of any incorrectly fitted lens, RGP, hybrid or soft. If the rotation when the lens is firt put in the eye that is stable but beyond a certain point, over time the lens will always rotate a little more and give blurred vision. The first stage of fitting these lenses is MoRoCo.

Movement - is the lens moving within the design perameters? I think this is a few mm's.
Rotation - is the lasre mark in the six O'Clock position or within the specified tolerances for lens fitting.
Comfort - is the lens comfortable / can it be felt at any point on the eye or eye lid even though the patient may deem the lens as comfortable?

Any of the optoms that post here will be able to elaborate further, the second part is to look at the corneal margins, so topography is only part of the story as that is designed to measure a normal eye and mainly the optical zone. With soft lenses the corneal margin has to be considered because they are larger than a standard RGP, so the optom must observe the cornea from the sides rather than straight on which is what they normally do. Following these basics, my soft lens fittings on the few occasiosn it has needed to be tweeked has been no longer than an RGP fitting.

5) Are there similar options from another company? My knowledge of the available contact lens solutions is now well over 5 years old, so I'm keen to find out more current information. There is a company based in Israel that also do soft lenses and I believe that the manufacturesr of the Rose K RGP lenses may be offering a soft lesn soon. The manufacturers of Kerasoft have been at it longest and this has resulted in two Queens Awards for Innovation.

I have been on the Kerasoft II which failed to work, Kerasoft III were excellent and I have been on the Kerasoft IC lenses since before they were launched as I was lucky enough to be asked to take part in a trial. Since 2004 I have worn nothing but Kerasoft IC lenses, they give me better vision than RGP lenses which I could only tolerate for on average an hour a day for only five days per week. For four years now I have worn lenses all day everyday, get 6/5 most days, a bad day i get 6/6 and when travelling on business regularly wear themfor over 20 hours for the duration of business trips which can be up to 7 days. On average I wear my lenses for 15 or 16 hours per day, no longer light sensitive, halos, streaks and blurs are practically non existant. In fact my loife is no different to someone who wears daily disposabel lenses for vanity reasons. Oh and the lenses are cheaper to maintain, I spens 66% less on lens cleaning solutions and eye drops than I did with RGP lenses.

Hope this helps.

Gareth

Hi Ian,

I'm in the south east of the UK and had ICs fitted by the NHS, regrettably with an unsuccessful outcome. However, during the periods when my vision was good with them it was certainly comparable to RGPs. I found the biggest problem was blurred vision when I was looking down at something - sitting over a desk, or standing at a workbench - almost as if the lens was drooping slightly away from the surface of my eye. May be this is another indication of a poor fitting lens? Strange thing is I do not get this problem with the Kerasoft #2 lens I currently wear in my worst eye. Downside of the #2 is that whilst consistent, the acuity is no where near as good as the IC.

As for cleaning solutions, I used Oxysept 1 step.

Hi Ian -- just to add (if anything can be added to Gareth's comprehensive reply !) that one factor in getting a lens which is viable for you as an individual sorted out is -- and I'll no doubt bring upon myself howls from some professionals -- is reluctance to embrace anything new.

As with any trade, when you practice in something, you end up making a huge investment in time, skills, training, equipment and so on. And I'm sure that even the best of us can all say that when something new comes along, well, we don't necessarily welcome it with open arms. In fact, scepticism is I think generally healthy. If I had a pound for every new whizzed-up idea that promised more than it delivered, every management fad that had to be quietly dropped because it made things worse not better and every sales pitch that someone unwisely bought into and ended up with a complete turkey as a product... suffice to say I wouldn't be sitting here, I'd be on a nice beach in California or somewhere.

But sometimes of course, there is genuine innovation. So you do have to keep an open mind. But I guess in optometry, things do move slowly. Apart from auto refractors I don't think an optometrist from the 1950's would notice much change in the toolset installed at a typical optician. They might be surpised at the economics of daily disposables, impressed with RGP materials and more consistent manufacturing techniques... but there'd be nothing too radical that would have them stunned and disbelieving.

Taking then a situation where for years and years, decades even, RGPs were the only course of action for Keratoconus I do get a sense of resistance in some professionals to other ideas. When I went to a large NHS hospital's eye unit in the West Country, the optometrist there was a superb example of a dilligent and caring professional. What they didn't know about fitting RGPs for Keratoconus wasn't worth knowing. In some ways, they worked miracles considering the highly distended cornea I ended up with. But that unwillingness to admit defeat can be a mixed blessing. Looking back, not with any blame at all just perhaps wistfulness, I do think now that I persevered far too long with a solution which had reached its limits i.e. RGPs. I'll never forget the slight sense of distain -- they tried to conceal it but couldn't quite -- when I showed up one day with a Kerasoft lens. It must have seemed to them like ingratitude for all their hard work. I really can't know if this attitude is widespread amongst professionals. But thinking about it, it would be very hard for it not to be so.

My conclusion is that if you really do want to "try everything at least once" the first thing is to find a professional who is willing to work with you to achieve that. It sounds like you've stumbled across someone who is happy to do that. If so, and you don't mind spending the time (and possibly the money too) trialling another lens option, then I'd do it. I think that unless you've gone through everything you'll always have that doubt that, if you do end up having to consider a graft, you'd not given all the alternatives your best shot.

The only possible downside to soft lenses is they are statistically more susceptible to being a transmission route for infections. But even there, the data is heavily skewed (from the research I've done) by the prevalence of soft lens induced infection in challenging climates. I remember that when I was in Japan, the heat and humidity caused the growth of moulds and biofilms on even the most innocuous looking surface. Scrupulous lens and lens case hygine were essential. I wondered how many people really did bother -- so many lens wearers in this country take such awful risks with lens care. They probably get away with it thanks to a more forgiving climate. It is then all down to patient behaviour -- making sure that cleaning and storage rules are adhered to if you use a soft lens. You can't though expect to take any chances as you might with RGPs and not have it cause problems. But I'm sure you're a saint when it comes to your lens care anyway

Best wishes

Chris

Thanks for all of the great replies. I'm seeing my consultant in two weeks and I'll try and go down the NHS route. Failing this, I'll try them privately.

Regards,

Ian.

longhoc wrote:The only possible downside to soft lenses is they are statistically more susceptible to being a transmission route for infections. But even there, the data is heavily skewed (from the research I've done) by the prevalence of soft lens induced infection in challenging climates.

I am afraid my research contradicts this when you look only at soft lenses and Keratoconus.

For people who wear contact lenses for vanity reasons (predominantly soft lenses) yes this is true and mainy due to poor hygiene. This was a subject discussed at a Hospital optomotrists confrence about 6 years ago and I spoke to the person from Sunderland hospital thsi did the study. I asked him how many with KC were included in his study and he reoplied None. So I asked why was that to which he replied that soft or hard lenses people with KC are far more diligant in the way they look after their lenses as for a vast majority it is contact lenses or nothing, we can't aford eye infections, especially those wearing contact lenses post graft.

Since then I have spoken to many otomotrists in the UK, from the US and in Mainland Europe who fit soft lenses for KC and the common response is that eye infection with soft lenses is no worse for in those wearing soft lenses than RGP's.

Unfortunatly the studies in to eye infections due to contact lenses concentrate on soft lenses because they are by far the most commonly fitted lenses in the general population. The RGP lenses are generally used (with the exception of some Mainland European countries) for more complex eye conditions and so fitted in less numbers so fewer studies done. Plus the studies rarely break down the reason and type of soft lens that resulted in the eye infection.

The same b asic rules to looking after lenses apply regardless of the material.

1) Always wash your hands before inserting or removing lenses.
2) Always use a good quality lens solution appropriate to the lenses you use.
3) Regularly clean lens cases useing cooled boiled water, I always rinse mine before use with lens cleaner / storage solution.
4) Periodically replace lens cases; there is a reason why most repalcement lens cleaners come with new cases.

My len cases get replaced every three months and a fresh clean lens case is used each night to put my lenses in and once my lenses are in my eyes again, the case is cleaned ready for when my lenses are taken out. For when I am on holiday or travelling on business I have about 6 on the go in rotation.

In 25 years of having KC I have never once had an eye infection, good basic hygiene is essential and if you might need to take lenses out where there is no where to wash your hands, carry some antiseptic wipes or one of the many handy portable alcohol gel dispsensers to disenfect hands before messing with your eyes.

I am on my 3rd kerasoft3 lens since I became intolerant
To rgp lenses. It's getting better with each prescription
Change.

I do have an issue at night when driving with lights
'ghosting' as people call it. I'm hoping that with a
Further tweek this will be reduced. I get them on nhs
Through jimmys in Leeds. I haven't been tried with any of
The other kerasoft lenses yet so not sure if they will make a
Difference?

Not a direct answer but any experiences may help...

Nick

Nick,

The ghosting can be a side effect from demoulding from the RGP lenses and may well subside as you finally settle down. If it does not resolve, then you may find that KeraSoft IC, the newest version of KeraSoft, may help to eliminate it.

However, as always, each person is an individual case and you really do need to discuss the ghosting issues with your eye care professional.

Lynn

Nickysells1 wrote:I do have an issue at night when driving with lights
'ghosting' as people call it. I'm hoping that with a
Further tweek this will be reduced. I get them on nhs
Through jimmys in Leeds. I haven't been tried with any of
The other kerasoft lenses yet so not sure if they will make a
Difference?

I use Kerasoft 3 lenses. I have the exact same night time problem. Lots more ghosting and smearing. Its also made much worse by bright/illuminated light on a dark background, eg: headlights, street lights, traffic lights, signs, LEDs etc.

If your visual acuity is quite good and goes poor at night. That could be a sign that the damaged part of the cornea (cone) is off-centre from the middle of the pupil. Mine is just south of the pupil centre.

So in daylight conditions, my iris covers most of the damaged cornea. Less light is coming thru the damaged area, allowing the contact lens provide sharp acuity.

In darker conditions, my iris opens up to let more light enter the eye. This then uncovers most of the damaged area and lets more light thru the damaged zone. This results in much poorer visual acuity, even with lenses.

Also, another problem that can affect ghosting is the depth of the damage. My lens fitter thinks that I have damage to the front and back of the cornea. Making lens fitting, that bit more challenging.