Lindor - Chapman

[Guest guest]

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

Ivor (PSC-Support UK)

Dear Ivor,

Thanks , I was with Lindor in Amsterdam last week and I have seen

the 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 both

groups going on to transplantation.the dose used was high 30mg/kg. Thes

results are opposite to the scandanavian trial which used moderate dose

when all the patients did well, few in both groups achieved endpoint of

death or transplantation, resulting in an inconclusive result although

in 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 .From

absortion studies the dose should be 20-25mg/kg body weight.It is not

true to say that the Mayo has abandoned urso , and the anticancer

effects in mild to moderate doses mean we should not certainley not

stop patients having urso. Over many years we simply have not had any

problems with urso and our cancer rates and transplantation rates are

extremely low.Inn the light of this result we will get together our

uncontrooled results for publication.

Tom Karlsen from Oslo and Simon Rushbrook from Cambdidge will be

attending and speaking about the genome scanning project so it should be

an exciting meeting. The news about funding is excellent , we are on a

good research spell at presnt and I will present the results at the

meeting.

all best wishes roger

>>> Pscsupport@...> 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 we

will

probably be able to pay this in two parts. £5,000 in July and £5,000

around

Christmas or soon after.

I have received sad news from the US about the Mayo high-dose Urso

trial.

Patients in the trial have been told that it is closing down and that no

benefits from administering Urso have been found. Ths has already

affected clinical

treatment and Dr. Lindor is no longer prescribing Urso to PSC patients.

When

one patient asked him about the possible chemoprotective effects against

colorectal cancer and cholangiocarcinoma he said that that was unproven.

He

therefore seems to have rejected most of his own previous research on

Urso

treatment for PSC. Some of his patients in the US PSC group who

participated in the

trial are dismayed and disappointed as, no doubt, Dr. Lindor is himself.

I

would 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