URSO

[Guest guest]

What I understand from what is said so far

is that Urso apparently makes patients more prone to develop varices. This is a

serious condition but, if I understand it right, this condition develops only

if you have portal hypertension. Hypertension is caused by cirrhosis. If your

daughter has portal hypertension it might be wise to stop using Urso. Do this,

of course, only after consulting with your daughter's hepatologist/ GI doctor.

I am no doctor; I am only trying to make sense of what I understand so far. As

far as I know there is not even a report written yet to summarize the results

of the trials. If your daughter does not have portal hypertension (like me) I

do not see an urgent reason to stop taking Urso. I for myself decided to keep

taking Urso. I like my LFTs to stay the way they are…..

Regards,

Chaim Boermeester, Israel.

From: [mailto: ] On Behalf Of eversole3

Sent: Tuesday, July 01, 2008 13:57

To:

Subject: urso

could you tell me how high the dosage was in this

study? does this mean

that urso is useless for psc? my daughter has been on it for a very

long time . years. is this going to make her progress faster? i'm

confused.

chris

[Guest guest]

What I understand from what is said so far

is that Urso apparently makes patients more prone to develop varices. This is a

serious condition but, if I understand it right, this condition develops only

if you have portal hypertension. Hypertension is caused by cirrhosis. If your

daughter has portal hypertension it might be wise to stop using Urso. Do this,

of course, only after consulting with your daughter's hepatologist/ GI doctor.

I am no doctor; I am only trying to make sense of what I understand so far. As

far as I know there is not even a report written yet to summarize the results

of the trials. If your daughter does not have portal hypertension (like me) I

do not see an urgent reason to stop taking Urso. I for myself decided to keep

taking Urso. I like my LFTs to stay the way they are…..

Regards,

Chaim Boermeester, Israel.

From: [mailto: ] On Behalf Of eversole3

Sent: Tuesday, July 01, 2008 13:57

To:

Subject: urso

could you tell me how high the dosage was in this

study? does this mean

that urso is useless for psc? my daughter has been on it for a very

long time . years. is this going to make her progress faster? i'm

confused.

chris

[Guest guest]

What I understand from what is said so far

is that Urso apparently makes patients more prone to develop varices. This is a

serious condition but, if I understand it right, this condition develops only

if you have portal hypertension. Hypertension is caused by cirrhosis. If your

daughter has portal hypertension it might be wise to stop using Urso. Do this,

of course, only after consulting with your daughter's hepatologist/ GI doctor.

I am no doctor; I am only trying to make sense of what I understand so far. As

far as I know there is not even a report written yet to summarize the results

of the trials. If your daughter does not have portal hypertension (like me) I

do not see an urgent reason to stop taking Urso. I for myself decided to keep

taking Urso. I like my LFTs to stay the way they are…..

Regards,

Chaim Boermeester, Israel.

From: [mailto: ] On Behalf Of eversole3

Sent: Tuesday, July 01, 2008 13:57

To:

Subject: urso

could you tell me how high the dosage was in this

study? does this mean

that urso is useless for psc? my daughter has been on it for a very

long time . years. is this going to make her progress faster? i'm

confused.

chris

[Guest guest]

I think we have to wait until the dust settles on the whole Urso issue. All the Urso trials have been bedeviled by inadequacies and contradictions. Until we get more info it's difficult to come to any conclusions. Dr. Chapman met Dr. Lindor in Amsterdam recently. He thinks that part of the problem is overdosing of Urso in the trial; the group being given Urso were taking 30-35mg per kilo bodyweight. For Dr. Chapman the optimum dose is 20-25mg. That is a plateau after which you get saturation levels. It also seems that many in the Urso group were in advanced stage PSC where any beneficial effects may be minimal. Dr. Chapman does not believe we should stop taking Urso. I will try to get a formative statement from him at our Oxford meeting on July 19th and pass it on to you all.

Ivor

[Guest guest]

I think we have to wait until the dust settles on the whole Urso issue. All the Urso trials have been bedeviled by inadequacies and contradictions. Until we get more info it's difficult to come to any conclusions. Dr. Chapman met Dr. Lindor in Amsterdam recently. He thinks that part of the problem is overdosing of Urso in the trial; the group being given Urso were taking 30-35mg per kilo bodyweight. For Dr. Chapman the optimum dose is 20-25mg. That is a plateau after which you get saturation levels. It also seems that many in the Urso group were in advanced stage PSC where any beneficial effects may be minimal. Dr. Chapman does not believe we should stop taking Urso. I will try to get a formative statement from him at our Oxford meeting on July 19th and pass it on to you all.

Ivor

[Guest guest]

Please send us some info about Dr. Chapman saying not to stop taking URSO. Thanks

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: urso

I think we have to wait until the dust settles on the whole Urso issue. All the Urso trials have been bedeviled by inadequacies and contradictions. Until we get more info it's difficult to come to any conclusions. Dr. Chapman met Dr. Lindor in Amsterdam recently. He thinks that part of the problem is overdosing of Urso in the trial; the group being given Urso were taking 30-35mg per kilo bodyweight. For Dr. Chapman the optimum dose is 20-25mg. That is a plateau after which you get saturation levels. It also seems that many in the Urso group were in advanced stage PSC where any beneficial effects may be minimal. Dr. Chapman does not believe we should stop taking Urso. I will try to get a formative statement from him at our Oxford meeting on July 19th and pass it on to you all.

Ivor

[Guest guest]

Please send us some info about Dr. Chapman saying not to stop taking URSO. Thanks

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: urso

I think we have to wait until the dust settles on the whole Urso issue. All the Urso trials have been bedeviled by inadequacies and contradictions. Until we get more info it's difficult to come to any conclusions. Dr. Chapman met Dr. Lindor in Amsterdam recently. He thinks that part of the problem is overdosing of Urso in the trial; the group being given Urso were taking 30-35mg per kilo bodyweight. For Dr. Chapman the optimum dose is 20-25mg. That is a plateau after which you get saturation levels. It also seems that many in the Urso group were in advanced stage PSC where any beneficial effects may be minimal. Dr. Chapman does not believe we should stop taking Urso. I will try to get a formative statement from him at our Oxford meeting on July 19th and pass it on to you all.

Ivor

[Guest guest]

Please send us some info about Dr. Chapman saying not to stop taking URSO. Thanks

Lori A.

"Aggressively Pursuing Solutions To Your Real Estate Needs!"

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI 53189

LoriUSA@...

www.Lori.FirstWeber.com

Re: urso

I think we have to wait until the dust settles on the whole Urso issue. All the Urso trials have been bedeviled by inadequacies and contradictions. Until we get more info it's difficult to come to any conclusions. Dr. Chapman met Dr. Lindor in Amsterdam recently. He thinks that part of the problem is overdosing of Urso in the trial; the group being given Urso were taking 30-35mg per kilo bodyweight. For Dr. Chapman the optimum dose is 20-25mg. That is a plateau after which you get saturation levels. It also seems that many in the Urso group were in advanced stage PSC where any beneficial effects may be minimal. Dr. Chapman does not believe we should stop taking Urso. I will try to get a formative statement from him at our Oxford meeting on July 19th and pass it on to you all.

Ivor

[Guest guest]

Thanks, Ivor, I thought I remembered something like that. I look

forward to reading your summary of the UK conference.

In terms of milk thistle, that I think someone asked about, I think

my husband's hep, Dr. Raj Reddy at the Hospital of the University of

Pennsylvania, is doing a big study on milk thistle, but in super-

high doses. It's not focused on PSC, though, I think his focus is

maybe Hep C? At any rate, he seemed very excited about it, and this

is clearly not a man that excites easily. I think the best case

outcome from his study is that he figures out how to reverse the

course of Hep C, which increases the number of donor livers

available for PSCers - of course, i was very very happy to read

Barb's post the other day that, over 9 years, she's yet to know

anyone on this site that did not get a liver when they needed one.

That was just great to hear. And I guess Barb's other advice is

just what we need to do now - chill out a bit. Somehow " fight

harder " seems to come more naturally...

tx,

Nina in Philly

the group being given Urso were taking 30-35mg per kilo bodyweight.

For Dr. Chapman the optimum dose is 20-25mg. That is a plateau after

which you get saturation levels.

[Guest guest]

Hi Ivor;

Thank you for posting this. I think that it is really important that

the results are published and peer reviewed and critiqued. We should

let this process take place before making any treatment decisions. We

don't have all the facts yet.

Here's a very pertinent example. In 1992 there was concern that

ursodeoxycholic acid may be promoting variceal bleeding in PBC

(primary biliary cirrhosis) patients, and the report was from PBC

experts at Mayo Clinic:

Gastroenterology 102: 1389-1391 (1992)

Progression of primary biliary cirrhosis with ursodeoxycholic acid

therapy.

Perdigoto R, Wiesner RH

Division of Hepatology and Gastroenterology, Mayo Clinic, Rochester,

Minnesota.

Three patients with symptomatic, noncirrhotic primary biliary

cirrhosis who had no evidence of esophageal varices on

esophagogastroduodenoscopy and who were treated with ursodeoxycholic

acid, 15 mg.kg-1.day-1, for a period of 1-2 years are reported.

Initially, all three patients showed improvement in symptoms of

fatigue and pruritus, and there was marked improvement or

normalization in serum levels of bilirubin, alkaline phosphatase, and

alanine aminotransferase. However, after 1-2 years, all three

patients progressed histologically to cirrhosis on follow-up liver

biopsy, and all had esophageal variceal bleeding documented by

esophagogastroduodenoscopy. These three patients represent examples

of ursodeoxycholic acid treatment failure despite improvements in

symptoms and biochemical liver test results. PMID: 1551544.

But the MOST IMPORTANT part of this paper was that it was eventually

RETRACTED two years later:

Retraction in: Wiesner RH, Perdigoto R. Gastroenterology. 1994 Aug;107

(2):628.

I am personally not writing to NIH about the high-dose urso study in

PSC because I don't know all of the details, the study has not been

published, and has not been peer reviewed and critiqued yet.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> I think we have to wait until the dust settles on the whole Urso

issue. All the Urso trials have been bedeviled by inadequacies and

contradictions. Until we get more info it's difficult to come to any

conclusions.

[Guest guest]

Hi Ivor;

Thank you for posting this. I think that it is really important that

the results are published and peer reviewed and critiqued. We should

let this process take place before making any treatment decisions. We

don't have all the facts yet.

Here's a very pertinent example. In 1992 there was concern that

ursodeoxycholic acid may be promoting variceal bleeding in PBC

(primary biliary cirrhosis) patients, and the report was from PBC

experts at Mayo Clinic:

Gastroenterology 102: 1389-1391 (1992)

Progression of primary biliary cirrhosis with ursodeoxycholic acid

therapy.

Perdigoto R, Wiesner RH

Division of Hepatology and Gastroenterology, Mayo Clinic, Rochester,

Minnesota.

Three patients with symptomatic, noncirrhotic primary biliary

cirrhosis who had no evidence of esophageal varices on

esophagogastroduodenoscopy and who were treated with ursodeoxycholic

acid, 15 mg.kg-1.day-1, for a period of 1-2 years are reported.

Initially, all three patients showed improvement in symptoms of

fatigue and pruritus, and there was marked improvement or

normalization in serum levels of bilirubin, alkaline phosphatase, and

alanine aminotransferase. However, after 1-2 years, all three

patients progressed histologically to cirrhosis on follow-up liver

biopsy, and all had esophageal variceal bleeding documented by

esophagogastroduodenoscopy. These three patients represent examples

of ursodeoxycholic acid treatment failure despite improvements in

symptoms and biochemical liver test results. PMID: 1551544.

But the MOST IMPORTANT part of this paper was that it was eventually

RETRACTED two years later:

Retraction in: Wiesner RH, Perdigoto R. Gastroenterology. 1994 Aug;107

(2):628.

I am personally not writing to NIH about the high-dose urso study in

PSC because I don't know all of the details, the study has not been

published, and has not been peer reviewed and critiqued yet.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> I think we have to wait until the dust settles on the whole Urso

issue. All the Urso trials have been bedeviled by inadequacies and

contradictions. Until we get more info it's difficult to come to any

conclusions.

[Guest guest]

Hi Ivor;

Thank you for posting this. I think that it is really important that

the results are published and peer reviewed and critiqued. We should

let this process take place before making any treatment decisions. We

don't have all the facts yet.

Here's a very pertinent example. In 1992 there was concern that

ursodeoxycholic acid may be promoting variceal bleeding in PBC

(primary biliary cirrhosis) patients, and the report was from PBC

experts at Mayo Clinic:

Gastroenterology 102: 1389-1391 (1992)

Progression of primary biliary cirrhosis with ursodeoxycholic acid

therapy.

Perdigoto R, Wiesner RH

Division of Hepatology and Gastroenterology, Mayo Clinic, Rochester,

Minnesota.

Three patients with symptomatic, noncirrhotic primary biliary

cirrhosis who had no evidence of esophageal varices on

esophagogastroduodenoscopy and who were treated with ursodeoxycholic

acid, 15 mg.kg-1.day-1, for a period of 1-2 years are reported.

Initially, all three patients showed improvement in symptoms of

fatigue and pruritus, and there was marked improvement or

normalization in serum levels of bilirubin, alkaline phosphatase, and

alanine aminotransferase. However, after 1-2 years, all three

patients progressed histologically to cirrhosis on follow-up liver

biopsy, and all had esophageal variceal bleeding documented by

esophagogastroduodenoscopy. These three patients represent examples

of ursodeoxycholic acid treatment failure despite improvements in

symptoms and biochemical liver test results. PMID: 1551544.

But the MOST IMPORTANT part of this paper was that it was eventually

RETRACTED two years later:

Retraction in: Wiesner RH, Perdigoto R. Gastroenterology. 1994 Aug;107

(2):628.

I am personally not writing to NIH about the high-dose urso study in

PSC because I don't know all of the details, the study has not been

published, and has not been peer reviewed and critiqued yet.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

> I think we have to wait until the dust settles on the whole Urso

issue. All the Urso trials have been bedeviled by inadequacies and

contradictions. Until we get more info it's difficult to come to any

conclusions.

[Guest guest]

I'm not sure weather or not I should be happy about it or not, but I was

notified yesterday that I have been on a placebo for the last 5 and 1/2 years. I

want to point out that I have been asymptomatic since diagnosis in 2001 up until

March of this year when I had my first cholangitis attack. I think that I would

be disappointed if I was on Urso and had the success that I have and was told to

stop taking it. So I guess I feel good knowing I faired so well without being

medicated.

I want to also state that I believe I was diagnosed at the earliest stages of

the disease as I have had some very conservative gastros in the past that have

taken enough blood work for my UC to have seen liver enzyme issues.

Based on the letter from Dr. Lindor and the clinical trials director at the NIH,

I would gladly volunteer for a roadtrip to DC along with a cross section of

fellow Americans/PSCrs to visit with congressman and Senators that have

influence over medical study financing. I remember doing a similar trip as an

employee of an airline. We had about a dozen of us that visited with the power

brokers of transportation issues.

Any good fighter would probably tell you, it's not always about avoiding the

punch but how to learn to take one. This is a blow to our PSC fight but we are

by no means out for the count. We all knew that URSO was never intended as a

cure. We only hoped that it might slow down the progression. We must continue in

the Fight, Whatever it Takes!

I thank Dr. Lindor, Dr. Harnois and their wonderful staff for getting the

funding and for executing this study. I also thank Dr Sorrell and the Nebraska

Medical Center for being an important player in this endeavor. If given the

opportunity, I will participate again. I know that many of you will too. And so

the fight continues....

Tarheel Tim

[Guest guest]

I'm not sure weather or not I should be happy about it or not, but I was

notified yesterday that I have been on a placebo for the last 5 and 1/2 years. I

want to point out that I have been asymptomatic since diagnosis in 2001 up until

March of this year when I had my first cholangitis attack. I think that I would

be disappointed if I was on Urso and had the success that I have and was told to

stop taking it. So I guess I feel good knowing I faired so well without being

medicated.

I want to also state that I believe I was diagnosed at the earliest stages of

the disease as I have had some very conservative gastros in the past that have

taken enough blood work for my UC to have seen liver enzyme issues.

Based on the letter from Dr. Lindor and the clinical trials director at the NIH,

I would gladly volunteer for a roadtrip to DC along with a cross section of

fellow Americans/PSCrs to visit with congressman and Senators that have

influence over medical study financing. I remember doing a similar trip as an

employee of an airline. We had about a dozen of us that visited with the power

brokers of transportation issues.

Any good fighter would probably tell you, it's not always about avoiding the

punch but how to learn to take one. This is a blow to our PSC fight but we are

by no means out for the count. We all knew that URSO was never intended as a

cure. We only hoped that it might slow down the progression. We must continue in

the Fight, Whatever it Takes!

I thank Dr. Lindor, Dr. Harnois and their wonderful staff for getting the

funding and for executing this study. I also thank Dr Sorrell and the Nebraska

Medical Center for being an important player in this endeavor. If given the

opportunity, I will participate again. I know that many of you will too. And so

the fight continues....

Tarheel Tim

[Guest guest]

I'm not sure weather or not I should be happy about it or not, but I was

notified yesterday that I have been on a placebo for the last 5 and 1/2 years. I

want to point out that I have been asymptomatic since diagnosis in 2001 up until

March of this year when I had my first cholangitis attack. I think that I would

be disappointed if I was on Urso and had the success that I have and was told to

stop taking it. So I guess I feel good knowing I faired so well without being

medicated.

I want to also state that I believe I was diagnosed at the earliest stages of

the disease as I have had some very conservative gastros in the past that have

taken enough blood work for my UC to have seen liver enzyme issues.

Based on the letter from Dr. Lindor and the clinical trials director at the NIH,

I would gladly volunteer for a roadtrip to DC along with a cross section of

fellow Americans/PSCrs to visit with congressman and Senators that have

influence over medical study financing. I remember doing a similar trip as an

employee of an airline. We had about a dozen of us that visited with the power

brokers of transportation issues.

Any good fighter would probably tell you, it's not always about avoiding the

punch but how to learn to take one. This is a blow to our PSC fight but we are

by no means out for the count. We all knew that URSO was never intended as a

cure. We only hoped that it might slow down the progression. We must continue in

the Fight, Whatever it Takes!

I thank Dr. Lindor, Dr. Harnois and their wonderful staff for getting the

funding and for executing this study. I also thank Dr Sorrell and the Nebraska

Medical Center for being an important player in this endeavor. If given the

opportunity, I will participate again. I know that many of you will too. And so

the fight continues....

Tarheel Tim

[Guest guest]



Yeah Tim! Hear, Hear!

Joanne H

(, Ca, mom of , 18, UC/PSC 2-06; JRA 98)

I'm not sure weather or not I should be happy about it or not, but I was notified yesterday that I have been on a placebo for the last 5 and 1/2 years. ... So I guess I feel good knowing I faired so well without being medicated.If given the opportunity, I will participate again. I know that many of you will too. And so the fight continues....Tarheel Tim

[Guest guest]



Yeah Tim! Hear, Hear!

Joanne H

(, Ca, mom of , 18, UC/PSC 2-06; JRA 98)

I'm not sure weather or not I should be happy about it or not, but I was notified yesterday that I have been on a placebo for the last 5 and 1/2 years. ... So I guess I feel good knowing I faired so well without being medicated.If given the opportunity, I will participate again. I know that many of you will too. And so the fight continues....Tarheel Tim

[Guest guest]



Yeah Tim! Hear, Hear!

Joanne H

(, Ca, mom of , 18, UC/PSC 2-06; JRA 98)

I'm not sure weather or not I should be happy about it or not, but I was notified yesterday that I have been on a placebo for the last 5 and 1/2 years. ... So I guess I feel good knowing I faired so well without being medicated.If given the opportunity, I will participate again. I know that many of you will too. And so the fight continues....Tarheel Tim

[Guest guest]

My doctor was present at the meeting in Amsterdam where also Lindor and

Chapman were. Last week when I saw him, he mentioned that 'the last

words have not been spoken yet about the topic of URSO effectiveness'.

Nevertheless, he cut my URSO dose in halve (was 23 mg/kg).

Gerard

>

> > I think we have to wait until the dust settles on the whole Urso

> issue. All the Urso trials have been bedeviled by inadequacies and

> contradictions. Until we get more info it's difficult to come to any

> conclusions.

>

[Guest guest]

My doctor was present at the meeting in Amsterdam where also Lindor and

Chapman were. Last week when I saw him, he mentioned that 'the last

words have not been spoken yet about the topic of URSO effectiveness'.

Nevertheless, he cut my URSO dose in halve (was 23 mg/kg).

Gerard

>

> > I think we have to wait until the dust settles on the whole Urso

> issue. All the Urso trials have been bedeviled by inadequacies and

> contradictions. Until we get more info it's difficult to come to any

> conclusions.

>

[Guest guest]

My doctor was present at the meeting in Amsterdam where also Lindor and

Chapman were. Last week when I saw him, he mentioned that 'the last

words have not been spoken yet about the topic of URSO effectiveness'.

Nevertheless, he cut my URSO dose in halve (was 23 mg/kg).

Gerard

>

> > I think we have to wait until the dust settles on the whole Urso

> issue. All the Urso trials have been bedeviled by inadequacies and

> contradictions. Until we get more info it's difficult to come to any

> conclusions.

>

[Guest guest]

HIGH dose URSO was found to be harmful and shortened the time to death or transplant. Marie

To: From: cmp12305@...Date: Tue, 7 Oct 2008 19:52:12 -0400Subject: Re: Re: Urso

Did the Mayo study find that high dose Urso was not effective, or all Urso?

MizKit

McCain or Obama? Stay updated on coverage of the Presidential race while you browse - Download Now!

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[Guest guest]

HIGH dose URSO was found to be harmful and shortened the time to death or transplant. Marie

To: From: cmp12305@...Date: Tue, 7 Oct 2008 19:52:12 -0400Subject: Re: Re: Urso

Did the Mayo study find that high dose Urso was not effective, or all Urso?

MizKit

McCain or Obama? Stay updated on coverage of the Presidential race while you browse - Download Now!

Want to do more with Windows Live? Learn “10 hidden secrets” from . Learn Now

[Guest guest]

High dose is in this study 30-35mg/kg body

weight.

25 mg/kg body weight is the recommended

dose if I understand things correctly.

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Marie Nilsson

Sent: Wednesday, October 08, 2008

03:23

To:

Subject: RE: Re:

Urso

HIGH dose URSO was found to be harmful and shortened

the time to death or transplant.

Marie

To:

From: cmp12305 (AT) aol (DOT) com

Date: Tue, 7 Oct 2008 19:52:12 -0400

Subject: Re: Re: Urso

Did the Mayo study find

that high dose Urso was not effective, or all Urso?

MizKit

McCain or Obama? Stay updated on coverage

of the Presidential race while you browse - Download

Now!

Want to do more with Windows Live? Learn “10 hidden secrets” from

. Learn Now

[Guest guest]

High dose is in this study 30-35mg/kg body

weight.

25 mg/kg body weight is the recommended

dose if I understand things correctly.

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Marie Nilsson

Sent: Wednesday, October 08, 2008

03:23

To:

Subject: RE: Re:

Urso

HIGH dose URSO was found to be harmful and shortened

the time to death or transplant.

Marie

To:

From: cmp12305 (AT) aol (DOT) com

Date: Tue, 7 Oct 2008 19:52:12 -0400

Subject: Re: Re: Urso

Did the Mayo study find

that high dose Urso was not effective, or all Urso?

MizKit

McCain or Obama? Stay updated on coverage

of the Presidential race while you browse - Download

Now!

Want to do more with Windows Live? Learn “10 hidden secrets” from

. Learn Now