What are the latest trends in managing KC?

[keatipa]

Hello

First posting, so please excuse if the answer to my question has been posted before.
I've been living with KC now for 30 years plus. Had a corneal graft on one eye about 26 years ago. Have been using hard lenses ever since. Over the years, I've developed quite a lot of scar tissue in the centre of my vision from the lenses. About 15 years ago, I started wearing "piggyback" lenses; i.e. a soft lens under the hard one. While this has helped a lot with comfort, I've become increasingly intolerant of the soft lens now (dry eyes, over-use). I've always been very lucky over the years to have found professionals who were recognised as the best in their field (e.g. Kontaktlinse Instituttet in Denmark where I lived before).

I've heard some rumours of new treatments being available now and would be keen to explore my options now before my vision gets any worse. I live now in London so any recommendations on the better professionals here would be welcome - no quacks please

[Anne Klepacz]

Hello and welcome to the forum,
The main new treatment for KC in recent years is collagen crosslinking (CXL) but that's to stop progression so may not be of much use to you at your stage. But there are constantly new developments in contact lens design so some of those might help you. You could either ask your GP to refer you Moorfields Eye Hospital or St Thomas's, or if you're happy to pay for your lenses privately, then have a look at the optometrists listed in Greater London on our list of KC friendly optometrists www.keratoconus-group.org.uk/optoms/index.php
And if you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet on keratoconus and the DVD of our 2009 conference which covered the current options in more detail.
Anne

[GarethB]

One of the problems those of us with grafts over 20 years old have is the dry eyes and multiple lenses doesn't help. There is also the isssue of oxygen transfer, so the more lenses you have or thicker lenses you have the lower the gas permeability.

I became totally intolerant of RGP lenses and my grafts are getting on for 24 years old now and I have found soft lenses for KC are the best lenses so far. The lenses I use are Kerasoft IC which is a silicon hydrogel lens with similar oxygen permeability to an RGP lens. I have also found that using a lubricating eye drops (there are several active threads on this subject) also help with the dry eyes. For me Systane preservative free helps and i put a drop in the back of the lens when I put them in first thing in the morning and another drop in my eye when I take my lenses out last thing at night.

Sensitivity to lenses can also because by the cleaning / soaking solutions used for lenses and I have found that Bausch & Lomb solutions work best for me but Is till have to rinse the storage solution off the lens using Bausch & lomb saline for sensitive eyes.

Many hospitals stick with RGP's and disposable soft lenses for piggybacking beacuse they are familier with this and it is cheap rather than it being best for the patient. This is often because they are over worked so have little or no time to saty up to speed with the latest developments.

[Lia Williams]

I'm not so sure that piggybacking is necessarily the cheap option. I believe that the people who are most likely to be piggybacking are probably already suffering from dry eye and other lens intolerance problems so, that coupled with the fact that 'all day' wear is not ten hours or so but nearer 15 or 16, a premium rather than a basic soft disposable lens is often required.

Lia

[keatipa]

Thank you for all the information. I've got a consultation booked at Moorfields in the New Year. If all else fails, I might try the Danes again.