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Hi everyone,

Can someone link me to some information on the high dose Urso issue at the Mayo clinic, I just went to see my doctor today and we discussed it and he would like me to forward some information to him to read ..................he wants to leave me on the Urso until he reads the issues that the Mayo has with it. Thanks

B.

PSC 1994

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,

I asked this question specifically to a

forum of hepatologists at the Israeli liver health foundation. They all were at

the San Fransisco meeting where Dr Lindor spoke about his research. The

hepatologists in the forum think that Dr. Lindor gave a too high (toxic) dose

of Urso to his patients. They now recommend a dose of up to 25mg/kg bodyweight.

Did you know that Urso stands for

" bear " . The hepatologist who answered me yesterday said that bears

only have ursodeoxycholic acid as bile acid (and not several bile acids like

humans do), and that that’s why it is called URSO.

Regards,

Chaim

From: [mailto: ] On Behalf Of B.

Sent: Wednesday, December 03, 2008

05:01

To:

Subject: information

on Urso and Dr. Lindor

Hi everyone,

Can someone link me to some information on the high

dose Urso issue at the Mayo clinic, I just went to see my doctor today and we

discussed it and he would like me to forward some information to him to read

...................he wants to leave me on the Urso until he reads the

issues that the Mayo has with it. Thanks

B.

PSC 1994

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I asked as my hep gave me the larger dose. It is impossible to know if it did good. However it did no harm. And so he said everybody else on the higher dose reacted well. That is why I am curious if they explained the toxicity. Thanks ShaulPSC UCSent via BlackBerry by AT&TFrom: Chaim Boermeester Date: Wed, 03 Dec 2008 17:29:38 +0200To: < >Subject: RE: information on Urso and Dr. Lindor Shaul, Not as far as I know. These hepatologists were in consensus that the dose used by Dr. Lindor was apparently too high. There was no way for Dr. Lindor to know this before he started the clinical trial, but this is what these hepatologists think in retrospect. Regards, Chaim Boermeester From: [mailto: ] On Behalf Of CholangitisSuprt (AT) aol (DOT) comSent: Wednesday, December 03, 2008 15:42To: Subject: Re: information on Urso and Dr. Lindor Chaim Is there any concrete evidence? Shaul PSC UC Sent via BlackBerry by AT & T From: Chaim Boermeester Date: Wed, 03 Dec 2008 11:06:14 +0200To: < >Subject: RE: information on Urso and Dr. Lindor , I asked this question specifically to a forum of hepatologists at the Israeli liver health foundation. They all were at the San Fransisco meeting where Dr Lindor spoke about his research. The hepatologists in the forum think that Dr. Lindor gave a too high (toxic) dose of Urso to his patients. They now recommend a dose of up to 25mg/kg bodyweight. Did you know that Urso stands for " bear " . The hepatologist who answered me yesterday said that bears only have ursodeoxycholic acid as bile acid (and not several bile acids like humans do), and that that’s why it is called URSO. Regards, Chaim From: [mailto: ]On Behalf Of B.Sent: Wednesday, December 03, 2008 05:01To: Subject: information on Urso and Dr. Lindor Hi everyone, Can someone link me to some information on the high dose Urso issue at the Mayo clinic, I just went to see my doctor today and we discussed it and he would like me to forward some information to him to read ..................he wants to leave me on the Urso until he reads the issues that the Mayo has with it. Thanks B. PSC 1994

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I asked as my hep gave me the larger dose. It is impossible to know if it did good. However it did no harm. And so he said everybody else on the higher dose reacted well. That is why I am curious if they explained the toxicity. Thanks ShaulPSC UCSent via BlackBerry by AT&TFrom: Chaim Boermeester Date: Wed, 03 Dec 2008 17:29:38 +0200To: < >Subject: RE: information on Urso and Dr. Lindor Shaul, Not as far as I know. These hepatologists were in consensus that the dose used by Dr. Lindor was apparently too high. There was no way for Dr. Lindor to know this before he started the clinical trial, but this is what these hepatologists think in retrospect. Regards, Chaim Boermeester From: [mailto: ] On Behalf Of CholangitisSuprt (AT) aol (DOT) comSent: Wednesday, December 03, 2008 15:42To: Subject: Re: information on Urso and Dr. Lindor Chaim Is there any concrete evidence? Shaul PSC UC Sent via BlackBerry by AT & T From: Chaim Boermeester Date: Wed, 03 Dec 2008 11:06:14 +0200To: < >Subject: RE: information on Urso and Dr. Lindor , I asked this question specifically to a forum of hepatologists at the Israeli liver health foundation. They all were at the San Fransisco meeting where Dr Lindor spoke about his research. The hepatologists in the forum think that Dr. Lindor gave a too high (toxic) dose of Urso to his patients. They now recommend a dose of up to 25mg/kg bodyweight. Did you know that Urso stands for " bear " . The hepatologist who answered me yesterday said that bears only have ursodeoxycholic acid as bile acid (and not several bile acids like humans do), and that that’s why it is called URSO. Regards, Chaim From: [mailto: ]On Behalf Of B.Sent: Wednesday, December 03, 2008 05:01To: Subject: information on Urso and Dr. Lindor Hi everyone, Can someone link me to some information on the high dose Urso issue at the Mayo clinic, I just went to see my doctor today and we discussed it and he would like me to forward some information to him to read ..................he wants to leave me on the Urso until he reads the issues that the Mayo has with it. Thanks B. PSC 1994

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I asked as my hep gave me the larger dose. It is impossible to know if it did good. However it did no harm. And so he said everybody else on the higher dose reacted well. That is why I am curious if they explained the toxicity. Thanks ShaulPSC UCSent via BlackBerry by AT&TFrom: Chaim Boermeester Date: Wed, 03 Dec 2008 17:29:38 +0200To: < >Subject: RE: information on Urso and Dr. Lindor Shaul, Not as far as I know. These hepatologists were in consensus that the dose used by Dr. Lindor was apparently too high. There was no way for Dr. Lindor to know this before he started the clinical trial, but this is what these hepatologists think in retrospect. Regards, Chaim Boermeester From: [mailto: ] On Behalf Of CholangitisSuprt (AT) aol (DOT) comSent: Wednesday, December 03, 2008 15:42To: Subject: Re: information on Urso and Dr. Lindor Chaim Is there any concrete evidence? Shaul PSC UC Sent via BlackBerry by AT & T From: Chaim Boermeester Date: Wed, 03 Dec 2008 11:06:14 +0200To: < >Subject: RE: information on Urso and Dr. Lindor , I asked this question specifically to a forum of hepatologists at the Israeli liver health foundation. They all were at the San Fransisco meeting where Dr Lindor spoke about his research. The hepatologists in the forum think that Dr. Lindor gave a too high (toxic) dose of Urso to his patients. They now recommend a dose of up to 25mg/kg bodyweight. Did you know that Urso stands for " bear " . The hepatologist who answered me yesterday said that bears only have ursodeoxycholic acid as bile acid (and not several bile acids like humans do), and that that’s why it is called URSO. Regards, Chaim From: [mailto: ]On Behalf Of B.Sent: Wednesday, December 03, 2008 05:01To: Subject: information on Urso and Dr. Lindor Hi everyone, Can someone link me to some information on the high dose Urso issue at the Mayo clinic, I just went to see my doctor today and we discussed it and he would like me to forward some information to him to read ..................he wants to leave me on the Urso until he reads the issues that the Mayo has with it. Thanks B. PSC 1994

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