UK Keratoconus Self-Help and Support Association

Hi

I am new to the forum, I hope someone can give some advice on Contact lenses. I have had KC for over 14 years, and for about 6 or 7 years I could manage with glasses, even though I was given RGP lenses about 10 years ago. I stopped wearing the lenses about5 years ago, but have now found that I am unable to continue with glasses. Please can anyone advise me about the types of lenses available and the degree of comfort they offer. I was recently given RoseK, but found it impossible to build up wearing time. I has to take them out after 3-4 hours due to reddness and irritation. Also I found that they fitted very tightly with little movement, thus retricting oxygen to the eye. There semed to be very little lubrication, I was using Bausch and Lomb, does anyone know of any other solutions that maybe provide better lubrication. At the moment I'm clutching at straws because I dont really know what the problem is. I had no problems wearing lenses the first time around, so it should be a doddle now but it isn't. Taking them off was a nightmare, as they seemed to stick tightly to the eyes. I have always found it difficult to take RGP lenses out, and use the following approach:

Open eyes wide, pull corner of eye, and blink. This worked fine with the old RGP lens but not with RoseK. Does anyone else use this approach, and do they have similar problems. I don't know If I have this problem because my eye has changed, or because of the lens, but I am now scared to use the lenses in case I can't take them out.

btw has anyone used Softperm by Ciba Vision and is it available in the UK? Is it as good as it sounds?

One other point does anyone know how to get an appointment at Moorfields. I am with a local hospital and am not happy with the traetment I am getting, and the amount of time I have to wait for an appointment. I would like to go to Moorfields, but can I do so? Can patients choose what hospital they are treated at, and if so what is the process?

Anyone with any views please docomment and thanks in advance.

Hi Mizan

Welcome to the board...........and will try and go through the questions from personal experience


Please can anyone advise me about the types of lenses available and the degree of comfort they offer

There are a number of lenses available to KC patients. However due to various reasons only a select few are pushed (financial / political). It all depends on which Lens clinic / Optican you attend.
I agree with you that RoseK2 are not the best lens for comfort but this is largely due to the design.

Types of lenses which you are available are as follows (following info is from my personal experience of the lenses and research)

Sclerals - http://www.sclerals.com/

Excellent for comfort - but may not be able to get as good visual acuity when advanced KC has set; when compared to say RoseK2 etc due to design constraints and how the lens works.However they still win hands down on comfort and for me were excellent until my KC rapidly progressed


Intra Lymbals - Lab No 7 - http://www.no7-contact-lenses.co.uk/

Mainly used in Post Graft cases; but again excellent for comfort. This lens comes in various designs and requires a experienced fitter.

Rose K2 - http://www.davidthomas.com/rose2k.htm

Probably the worlds most popular lens for Keratconus; but requires fitting from an expert.

Comfort 02 - http://www.davidthomas.com/comforto2.htm

Soft lens which seems to work more for mild/medium KC stages

Soft Perms - http://pros.cibavision.co.uk/ecp/pff/re ... ction_id=5

Hybrid lens with rgp centre. Again, excellent comfort but may have issues with oxygen permability; however new lens design has meant to address this issue

Persecon E Keratoconus
http://pros.cibavision.co.uk/ecp/pff/re ... ction_id=5

Another RGP lens often gives good results for people who can no longer tolerate RoseK2

As mentioned earlier, many of this lenses do not get used due to limited knowledge from the fitter. Soft Lenses do have a place for Mild/Medium KC cases and you would be surprised at the results potentially gained, on par if not BETTER than rgps. But clearly this does depend on the state of the cornea itself

Your Rose K Lens

I guess you need to go back to your lens fitter and get the fit checked. It may be a number of reasons why you are having issues; from incorrect fit, KC increased, lens intolerance etc. However one thing to bear in mind is that if the lens is difficult to get off the cornea than that is more than likely due to a tight lens fit hence will cause lack of oxygen uptake in the cornea thus may be the reason why after 4-5 hours you have to remove the lens (corneal swelling due to lack of oxygen)

With regard to solution; take a look at Systane which I feel is a great product which was I was introduced to from Lynn at this very site.


BTW has anyone used Softperm by Ciba Vision and is it available in the UK? Is it as good as it sounds?

Yes it is available. I had used this lens for around 18 months back in 2001 and got the best vision from them; but then at that stage I had medium KC so that may not be a good indication of its success. They were than pulled form the market due to lack of oxygen getting to the eye and the material. Since then they have been relaunched and are available. Again, you will need a good lens fitter to fit these; so best bet would be to fone the distributor and get a authorised fitter

Moorefields

Yes you will need a referal to the Hospital from your GP/Optician; however the waiting lists are phenominal and you will not neccesary get better treatment.....however one thing you will get is potential access to some world class lens fitters...who do know there stuff....so your definition of better treatment may differ from mine ......bt only down side is appointment waiting times.

Hope that helps

Hey there Mizan! Welcome to the board.

Jay has written an excellent reply to you already lol, so i don't really have a lot to say except for personal experience! Not that i had a lot of info to share anyway!! LOL!

Have worn a RGP lens for the last thirteen years, i did get really good vision and wear time (about 12 hours a day and more). Two years ago though i started to get a really sore red eye wearing it, and in the last two months have lost a lot of sight with an infection and ulcers.

I do have new RGP lenses, but am finding comfort a big issue. I have now got scleral lenses (only since Friday), and have found that my vision is less, but they are much more comfortable and i almost forget i am wearing them, which is something i've never had with lenses before so that is a major step forward! lol!

I think it is a lot down to personal choice and who you see. Everyone is different, and optometrists have lenses that they may prefer to fit, so you may need to ask if you want to try something else.

You can be referred to Moorfields, but as most here know, myself included being a patient there myself, there are very long waiting lists. i think you need to draw up what you really want from who you see. Long waiting lists are sadly very much the norm for hospitals, but if you aren't happy with the treatment you are getting where you are now, then maybe it would be a good choice.

Just for the record though, most high street optometrists are very skilled in what they do, and will be able to go through lenses with you. I see a private optometrist as well as Moorfields and have no problem getting an appt. I guess you would need to ask at your hospital for any they can recommend, and take it from there.

On being referred to Moorfields, you will need your optician or GP to send a referral for you. This can be a long wait for starters.

As for systane which Jay has mentioned, i'm more than happy with it too, and would suggest trying it for better lubrication. Although i would agree that it would be worthwhile you going back to your fitter to check it out just to make sure. Our eyes change all the time, so it is best to have it seen to.

Best of luck with everything and drop in soon and let us know how you're getting on!

Sweet X x X

Hi Sweet and Jay

Thanks for your responses. I must admit I had never considered Sclerel lenses, as they look a bit scary. Are they easy to put on....take off?

many thanks

Mizan

Hi

Yes they are very easy to put in, but must admit they do look scary at first! but thereafter simple!

But again, do explore soft lenses as well if you KC is not advanced.

Hey there!

Have only had sclerals for three days now so still really early to say! Am finding them a little hard to get used to, but not impossible.

Vision wise it is not as good as RGPs but please don't take my word for it on this, as i've just lost some vision recently and even with my old lenses i've lost two lines.

They are however much more comfortable to wear, and i do sometimes forget i have them in, so that is a good sign! I guess it is a choice between better vision or comfort.

Am kinda playing with both at the minute and this is ok. I can't wear them to drive as i only just make the requirement with RGPs but this is fine. I just need to remember before i get in the car what i am wearing lol!

But with sclerals my eyes aren't red and as painful as with RGPs, so i guess you will need to look into it and see how you get on (please excuse the pun lol!) But as Jay has said, do check out soft lenses as well, as everything is worth a try!

Sweet X x X