Re: Lindor - Chapman

[Guest guest]

I got it both times, attached to your post but after the typical links that follow a message.

Ian (52) PSC 89

I tried to forward this message from Dr. Chapman but it didn't go thru. Trying again.

Ivor (PSC-Support UK)

---------- Forwarded message ----------To:

Date: Sun, 22 Jun 2008 09:19:32 +0100Subject: Re: Fwd: Meetings and PosterDear Ivor,Thanks , I was with Lindor in Amsterdam last week and I have seenthe results of the trial. The data is surprising , the patients in the

study had advanced PSC and the pts did badly with high numbers in bothgroups going on to transplantation.the dose used was high 30mg/kg. Thesresults are opposite to the scandanavian trial which used moderate dose

when all the patients did well, few in both groups achieved endpoint ofdeath or transplantation, resulting in an inconclusive result althoughin favour of urso.There are a number of interpretations of the recent

data but it is clear that high dose 30-35 will not be advocated .Fromabsortion studies the dose should be 20-25mg/kg body weight.It is nottrue to say that the Mayo has abandoned urso , and the anticancereffects in mild to moderate doses mean we should not certainley not

stop patients having urso. Over many years we simply have not had anyproblems with urso and our cancer rates and transplantation rates areextremely low.Inn the light of this result we will get together ouruncontrooled results for publication.

Tom Karlsen from Oslo and Simon Rushbrook from Cambdidge will beattending and speaking about the genome scanning project so it should bean exciting meeting. The news about funding is excellent , we are on agood research spell at presnt and I will present the results at the

meeting.all best wishes roger>>> 20/06/08 13:43 >>>,Am forwarding this message to you - I haven't had a reply so you may not

have received it. And I wanted to add a couple of things.We will not be able to raise the £10,000 promised you for July. But wewillprobably be able to pay this in two parts. £5,000 in July and £5,000

aroundChristmas or soon after.I have received sad news from the US about the Mayo high-dose Ursotrial.Patients in the trial have been told that it is closing down and that nobenefits from administering Urso have been found. Ths has already

affected clinicaltreatment and Dr. Lindor is no longer prescribing Urso to PSC patients.Whenone patient asked him about the possible chemoprotective effects againstcolorectal cancer and cholangiocarcinoma he said that that was unproven.

Hetherefore seems to have rejected most of his own previous research onUrsotreatment for PSC. Some of his patients in the US PSC group whoparticipated in thetrial are dismayed and disappointed as, no doubt, Dr. Lindor is himself.

Iwould like you, at a later stage to write something on this for " PSC-News " when the dust has settled and a report on the trial has been made. Best wishes,

Ivofr-- Ian Cribb P.Eng.