KeraSoft Soft Contacts for KC

[marc2233]

Hello All,

My name is Marc and I live "across the pond" in Miami, Florida, US.

I am a KC patient and I am a member of the "National Keratoconus Foundation" (NKCF.org) on-line KC user's/support group in the US.

I am currently using soft toric lenses to deal with my KC. I see so-so with them because no matter how hard I tried, I could not get-used-to/tolerate RGPs (I literally rather not see than go through that torture!!!).

Question:
Here on our user’s group (NKCF.org in the US) have been hearing about the KeraSoft soft KC contact lens which is manufactured in jolly-ole England!

Would like to know the experiences (good/bad/or-indifferent) of those folks who have used the KeraSoft soft KC lenses:

i.e.
+ made a big difference in your vision as compared to other soft contacts?
+ your vision did not improve much as compared to other soft contacts?
etc.

Any and all feedback (especially from patients) would be greatly appreciated.

Thanks!
Marc
Miami, Florida, US

[Andrew MacLean]

marc

Welcome to the UK Keratoconus self-help support group forum. We have a number of users who live in the United States, and indeed in several other jurisdictions around the world.

I am afraid that I have never been able to wear soft lenses for my keratoconus, but others who use the forum have and some use lenses made by KeraSoft. I am sure that one or more of them will be along in a moment.

Every good wish.

Andrew

[longhoc]

Hi there Marc

Firstly, thanks for asking the question, as I’m sure it’s applicable to many others interested in what the options are for those who, for whatever reason, can’t tolerate RGP lenses.

As luck would have it, I had my second consultation for KeraSoft lenses today, so I can give you my personal perspective while it is fresh in my mind. A bit of background might be in order so you can see the context of my comments. Like most people with Keratoconus, I initially managed the condition with standard soft lenses, then moved onto non-specialist RGPs followed eventually by a product customised for Keratoconus (RoseK which you might be familiar with as it’s widely promoted in US markets). Unlike you, the RGPs were well tolerated initially but as the Keratoconus progressed, this became less and less so until I was considering surgery – DALK probably. Unfortunately corneal thinning made me ineligible for T-CAT, Intacs or CXL (or at least gave me a higher probability of less than optimal outcomes for these treatments).

So, I was really between a rock and a hard place. Resisting pressure for a graft or transplant was a personal decision based on a combination of factors: 1) the moral and ethical responsibility for recipients of donor tissue to exhaust all other possibilities (out of respect to the donor to not “waste” their generosity) and 2) the unpredictable results of surgery. These two factors are definitely down to the individual, and I’d never judge anyone making different choices for themselves. This means that reaching for things from the surgical treatment toolkit might still be considered by patients. I can certainly understand people who get fed up with lenses of any description and simply want “out” of the whole dynamic. I think the best thing to do is make a conscious choice after getting all the facts.

Anyhow, for me, without any particular reason for optimism, I decided to try KeraSoft lenses for irregular corneas. I wasn’t aware until you said they are more widely known in the UK than the US ! Usually, it’s the other way round.

One of the most interesting phenomenon – which it sounds like you’d not need to encounter as you’ve been wearing soft torics – was the necessity to go through a transition phase to reduce/remove the influence of the RGP lens on the cornea. This was so at odds with what seems to be conventional wisdom from even specialist optometrists, namely that the cornea doesn’t “spring” back in just a matter of hours or even days. Months is more like it. However, if you’ve not been wearing RGPs you won’t need to adapt. Worth mentioning to your friends at the excellent NKCF.org though – if any of them are at all like me, patience isn't something that comes easily !

That done, if needed, you can begin the fitting process.

Here, I can only give my own view, but the key to success here is in the skill and experience of the optometrist. Put simply, the KeraSoft lens is, if I understand correctly, an order of magnitude more configurable than even the most versatile RGP lens. That is its strength, its USP if you like. But with flexibility comes complexity. I would need the input of a professional to say what, exactly, the practitioner needs to learn and how long it takes to learn it in order to successfully dispense KeraSoft to patients. But my limited knowledge suggests that the time commitment in the part of both the optometrist and the patient is higher than that for RGP prescription.

Again, just my understanding, at a theoretical level, a KeraSoft lens can be made to fit any situation. I’m currently at the “early/middle” phase of fitting – excluding the non-starters, trialling the possible best candidate designs. I think it might take several cycles to reach the optimal one. At this point, in true infomercial style, I’d better state the obvious “individual results may vary” – I gather that I am atypical even by the widely varying standards of Keratoconus patients. It’s entirely possible that moderate Keratoconus corneas can be fitted in one “hit”. Hopefully the professionals who use the KeraSoft product in a clinical environment can give a bit more detail on what the average fitting/re-fitting/re-re-fitting routine is.

Here we touch on patient psychology. A patient who is motivated for whatever reason (mine are at the top of this post) to pursue the KeraSoft option to either what they consider a good outcome or the end of the road and abandonment is obviously not going to be deterred by a half a dozen extra hours in clinic. Conversely, a patient who is more-or-less content with their vision via their current lens type or else so opposed to one more minute of fitting sets being tried out on them (!) may lack the motivation needed to complete the fitting process. Definitely worth the Keratoconus figuring out where they are on that spectrum.

Talking of the fitting process, this is one area where I can be very objective. Having suffered – I don’t use that word lightly – fitting sessions for RGPs, the testing of the fitting set for KeraSoft is a walk in the park compared to the excruciating agony of Keratoconus RGP fitting set. So that alone is a huge plus.

The end result of today’s fitting session was – with a bit of luck – a lens which won’t be materially worse in terms of visual acuity than my RGP and in a different league for wear tolerance (I can wear the KeraSoft for as long as I like, I genuinely don’t know it is there). And as I say, that certainly isn’t the conclusion of the trial. Whereas with RGPs, given their contraints, I was at the limit of which of their variable parameters could be changed without impacting the others. With KeraSoft, as Karen Carpenter would say, we've only just begun.

My optometrist sometimes posts on this board, so may provide some input as far as a professional is concerned. For a patient, the takeaway is from my perspective “you’ve got absolutely nothing to lose”. But the optometrist needs to know what they are doing and honor the time it takes to do it. I've a hunch that "amateur night" might end up with a dissapointing performance for all concerned.

Anything specific you’d like to ask, do please post. There’s lots of experience and opinions available from the members, we’re not shy in voicing them usually !

Best wishes

Chris

PS really envious of you living in hot, hot Miami ! London was a chilly 55F today Keratoconus is bad enough; Keratoconus in a cold climate is worse !

[Lynn White]

Hi Marc,

First of all let me declare my interest: I am a private KC practitioner but I am also a consultant to the company that makes KeraSoft. I also do post on the NKCF forums from time to time. KeraSoft IC is the newest version of the lens which has been available here in the UK for over 15 years. As you probably know, KeraSoft IC has recently been licensed by Bausch and Lomb and will be available at some point in the US, which is why, I guess, you are asking about them! To answer longhoc, in actual fact, development in medical technology often takes place more readily outside the US due to the expense of FDA approval.

Longhoc had to undergo the inconvenience of RGP "demoulding" before he could move forward with KeraSoft fitting. Any rigid lens tends to mould the cornea - indeed it is this very property that is used in the practice of ortho-K, where this is actively used to reshape the cornea.

As you are already in soft lenses, this does not apply and if you were to be fitted in KeraSoft, or any other soft lens for KC, then there would be no demoulding issue.

Whether you would see better with them rather depends on why your vision is only "so-so" with what you are wearing now. Poor vision may be down to uncorrected high astigmatism or possibly due to the fact that the lens is unstable due to the irregular shape of the cornea. Soft lenses for KC, (of which there are actually at least three designs currently available in the UK) tend to be much more stable, as they are designed specifically for keratoconus, and also do cover a wide range of parameters.

Generally, vision is much better than "regular" soft lenses, simply because the lenses are specially designed to work with these conditions. However, it is always wise to remember that individuals are just that - one of a kind!

Lynn