Re: the Urso discussion

[Guest guest]

I have been following this sad discussion on the failure of the Mayo high-dose Urso trial to find any benefits for PSC patients. Sad because Urso appears to be the one and only med. which has substantial benefits for us. I think that we should withold any judgement until we see the full report of the trial. But from what has been said by those who've been involved in the trial, Dr. Lindor appears to have changed his mind or revised his views on all his previously published work on Urso for treatment of PSC. He seemed pretty sure, in the article Dave mentioned, that UDCA (Urso), significantly decreases the risk of developing colerectal dysplasia or cancer in patients with UC and PSC. ("Urso as a chemopreventive agent in patients with UC and PSC." Gastroenterology, Vol.124, issue 4, pp889-893, Apr. 2003. Dr. Chapman continues to maintain in his latest article, that "Urso appears to reduce the incidence of colorectal neoplasia in patients with PSC and there is some suggestion that it may also reduce the incidence of cholangiocarcinoma." (T.Kitiyakara, R.W.Chapman, "Chemoprevention and screening in PSC. " Postgrad. Med J. 2008. 84 pp228-237).

It should be noted that there is CLINICAL evidence that where heps have been prescribing high-dose Urso for PSC for many years, there are typical low rates of cancers of the bile ducts and colon. e.g. Dr. Chapman's clinic at the Radcliffe Hospital, Oxford, UK. Prof. Adolph Stiehl's clinic at the University, Heidelberg, Germany, at the Mayo itself and several other US liver clinics; although I know this is not clinching evidence.

It was Dr. Chapman who said to our UK support group, (tongue in cheek) that Urso was such a useful med that it should be in the water supply. He finally convinced, more recently, Prof. Schrumf, head of the PSC research team in Oslo, Norway, (the one that has received the huge bonanza for research), of the value of prescribing Urso for PSC. I am today sending an email to Dr. Chapman to get his response but he is notoriously poor at responding. He might take more notice if he gets a flood of emails from the US! His emails address - .Chapman@...

Meanwhile keep taking the Urso! As usual we have been getting a lot of good sense from Barb. She's right that nowhere has it been found that Urso extends our survival or time to transplant. We have all been hoping that what has been found with PBC in several trials - that IF diagnosed early and Urso prescribed, PSC patients can live a normal life-span - but it must be found in early stage - we have been hoping that this may be true with us - it may be the case but the evidence isn't there.

It should be noted that all trials on Urso for PSC are invariably flawed - because of time - too short; patients - too few; or because of the rarity of the disease patients for trials cannot be divided into sub-groups according to the PSC varients. We end up with a ragbag of different PSC varients some of which present quite differently and may well respond differently to Urso; small-duct PSC, AIH + PSC, early stage PSC, late stage PSC, PSC + IBD, PSC without IBD, paediatric PSC, adult PSC, symptomatic PSC, asymptomatic PSC, Autoimmune cholangitis. We are therefore not comparing like with like. I'm sure this will be an unavoidable flaw in the Mayo study. All this is VERY frustrating for patients and, not least researchers. Perhaps Dr. Lindor is just very fed up with the whole thing. It is rumoured that he is only human after all. What is for sure is that Axcan won't be funding his research for much longer.

Ivor (PSC-Support UK)