C3R Warning Link

[tommy.dean]

matthew yes some nhs hospitals are trialling it but they are putting the uv40 light less than 5cm away from the eye, which considering the reason many of us were told collagen cross linking isn't a viable technique seems very contradicting. go to kcglobal.org mate if you want more information.
tom

[Andrew MacLean]

Louise

No it has not. It may have been shown to slow the progression or even to delay the progression, but both of these are some way short of the procedure having been shown to stop the progression.

I am sorry to seem pedantic about this, but we are dealing with an issue on the basis of which people may commit to spend very large sums of money, so the vocabulary is important.

I did concede that if the procedure had been available when I was at early stage, I would probbly have opted to have it done.

Andrew

[tommy.dean]

what are you on about andrew, the KC forum is supposed to help other KC'ers your miss advising them, collagen cross linking slows,stops, or even reverses keratoconus therefore stopping the need for people to have transplants maybe you've got an issue with c3r cause you've already had transplants and your bitter over it.
tom

[Andrew MacLean]

I plead 'not guilty' to the charge of mis-advising people. Indeed I think that the sometimes enthusiastic support for new therapies here runs that risk; C3R is far to new a procedure to have been demonstrated to 'stop' far less 'reverse' the progression of KC.

Is it useful? Yes, in some cases.

Can it delay the progression of KC? Yes in some cases.

Does it stop the progression of KC? It is too early to know.

Are there indications of risk involved in C3R? That kind of brings us back to the head of this string, and the answer seems again to be, yes.

[Sajeev]

With all due respect to you Andrew, because you have over some time been a great support to KCers and are very friendly and helpful to other, I just want to comment on the issue here.

You said that some people had a transplant?! That is the issue, nothing else.

[tommy.dean]

It's been tried and tested for 9 years andrew with no complications and you should have to back up your comments thats what i was told by the moderators when writing extreme posts which is what you are doing. They have found a treatment that directly affects the cause of keratoconus, i think this should be embraced it means no longer will keratoconus effect people as badly as me or you i.e needing pk transplants why couse this be a bad thing? the worst possible outcome of c3r is progression starts again, worst possible outcome of a transplant is you loose your eye or you get blinding rejection, not to metion the small ones such as cataracts gluacoma oh an severly poor vision even tho it's a "success".
tom

[Anne Klepacz]

I appreciate that people have strong views on this topic, but that does not justify personal attacks on forum members. An exchange of views should be possible while still showing respect to one another and accepting that there will be different opinions.
Our conference on Saturday will include a presentation on C3R. We will be making a DVD of the conference, which will be sent to all KC Group members later this year. This will give us all more information on which to base decisions on this treatment. In the meantime, can we please continue this discussion in a constructive and supportive way.
Anne

[tommy.dean]

andrew sorry if i was nasty just want c3r to be keratoconus's magic cure, anne we don't need the dvd put it on the website whats been tested for the longest the iroc version not the nhs's 1 where there puttin it too close to the eye eek.
tom

[tommy.dean]

Anyway i'll be away from a computer for next few days again so won't be bugging any of you, taking my dad to wembely to see "the who" I thought i owed it him for paying for me to go to the london vision clinic for last 10 months.
tom

[Hari Navarro]

Hi everyone,
I think a lot of the intense enthusiasm that is being displayed by some keratoconus sufferers for C-3R is largely due to the never ending wait many of us have endured for the slow wheels of progresss to actually get around to addressing keratoconus.
In saying that, recent evidence does show that behind the scenes many diligent researchers and doctors have been working away at solving our problem, we hear of clinical cross-linking results stretching back almost 9 years, Photo-Astigmatic Refractive keratectomy with over 10, mini-Ark also has patient results that are now over ten years old... yet the frustration, for us as KCer's, is that the practical end of the treatment is so long in getting accepted.
I think we just all want our doctors to be as enthusiastic as we are, we want them to see how important it is for us to have data and access to ALL possible options in combatting this disease. But sadly many variables dictate how and when we get to see treatments become readily available...
This is what American KC specialist Yaron S. Rabinowitz M.D.of the Cedars Sinai Medical Center, Los Angeles California had to say on the matter:

This procedure is not presently approved by the FDA for use in the United States. According to Federal Law any procedure performed in the United States that is experimental or investigational should be performed under the oversight of an Institutional Review Board(IRB).

This law is designed to protect patients against undue harm and that they are fully informed about any potential untoward near term and long term effects of experimental treatments... If you are being offered this treatment in the United States and you are not asked to sign a consent form that indicates IRB oversight, I would strongly advise against you having this procedure involved, since it is being performed outside of Federal guidelines and without any oversight.

This treatment claims to reverse keratoconus and stop its progression. Laboratory evidence performed to date by European investigators indicating that the collagen strength of the cornea is increased is quite good. The clinical evidence that it actually stops progression and reverses the disease is questionable at best. Clinical studies to date fail to convince me that there is any evidence that it retards the progression of the disease.

Long term longitudinal studies are required in which patients with the disease are followed over a long period of time compared to another group that has actively progressive disease to prove that this works.

I am currently advising my patients against having this procedure until enough new and long term data are available. If they feel compelled to do something which might halt their progression they might want to consider INTACS as a better and safer alternative. Although no one has claimed that INTACS halt the progression of keratoconus there is some preliminary data which suggest that patients who have had INTACS and have had at least 8 years of follow up have demonstrated no significant progression of their disease.

But then Dr. Rabinowitz is heavily involved in prescribing INTACS for KC, so it could be argued that he is not exactly exempt from bias. He goes on to state that INTACs have an 8 year set of preliminary data to support lack of KC progression, but I tend to wonder how much actual hard data was available before he inserted his first set of inserts? Wouldn't he have been in the same place that cross-linking doctors are now? A situation where there has been pleasing clinical trails but where the truth could only really be assessed by actual practical application.

We are not lab rats but there comes a time when strides have to be taken, there are no 100% guarantees in any treatment. Just look at PK to see the variation in results (yes things have improved but I still read of many that are living with graft as an 'acceptable' alternative to KC rather than the 95% success its advertized as).

To my mind if any medical professional is to call themselves a keratocous expert then they need to actively be exploring all avenues of treatment... the KC community has waited long enough, there is not sure fire cut off time when a procedure suddenly become accepted.

In the US the FDA granted permission for INTAC surgery and overnight it become the wonder cure we had all been waiting for... hailed throughout the media, yet reality has shown that they are no more than another option (an option that comes with its own set of complications and advantages)... I believe that certain doctors become affliated with a particular procedure and come under much pressure to promote it. This is fine as long as emerging treatments are also taken up and given the chance to evolve.

Hari