Re: .... URSO study stopped-met with Dr. Lindor today: Lori

[Guest guest]

You are so welcome, Lori. Your dad will be o.k.And as you said we will

investigate other studies, of course.

 

Varices were one of the negative effects that my study coordinator told me

about. It is  bleeding in the Esophogues and it usually happens in stage 4 of

the disease, i guess. I will look for a complete definition and get back to you.

I have not had a chance to read the rest of e-mails, so i do not know yet if

some one has given you a good definition of it.

 

From: Lori

Subject: Re: URSO study stopped-met with Dr. Lindor today

To: @ yahoogroups. com

Date: Tuesday, July 1, 2008, 2:03 AM

My Dad had his yearly appointment at Mayo Clinic with Dr. Lindor.  My Dad has

been taking the URSO medicine since  around 1996-97 with his PSC diagnosis in

1996.  Dr. Lindor explained, that  the study has shown that URSO has caused very

negative effects  to the liver and that is why the study has been discontinued. 

My Dad is devastated by this news.  Dr. Lindor seemed very concerned & down

cast and didn't have much to say aside from the discontinued study and

why.  Does anyone have anything positive that I can share with my Dad? Does

anyone know specifically what URSO does to the liver to cause this negative

effect? What does it do to the liver? He had so much hope in this medicine.  His

liver tests always came back only slightly elevated each year but I guess the

liver test results can come back good but the URSO can still be causing serious

liver damage and/or  progress the disease faster.  Anything I can share

with

my Dad would be appreciated.  Does anyone know of any other studies that will be

starting or talk of ones?  If anyone is still taking URSO, (STOP). Thanks a lot.

 

Lori A.

 

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

 

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI  53189

LoriUSA@ Yahoo.com

www.Lori.FirstWeber .com

 

E-mail to the NIH

The following is the e-mail i received back from the NIH.  I hope everyone is

following Dr. Lindor's advice to contact the NIH to support funding of research

on PSC.  The more e-mails the better.

 

I hope this finds everyone well!

 

take care,

 

Ross Heil

 

 

 

Dear Ross,

Thank you for taking the time to write to me and to share your personal

story.  I know it must be difficult to be diagnosed with PSC and UC but

it looks like you are channeling your energies in the right direction.

We, too, hope that you will complete your studies and go on to research

PSC.  We can use all of the help that we can muster in studying this

disease!

I am sure that you are disappointed that Dr. Lindor's high dose URSO

study ended the way it did.   But as you know, even " negative " studies

have some positive results.  Dr. Lindor and his colleagues did an

excellent job of very carefully conducting this clinical trial and they

have collected a wealth of data that will be used beyond answering the

question about URSO.  While it wasn't the result that we all wanted, it

does answer an important question:  dose high dose URSO benefit patients

with PSC?  Now that we think we know the answer, those patients taking

high dose URSO can stop - why take an expensive drug that doesn't appear

to be of benefit?  It also is an opportunity for clinicians and

researchers to look for new/other therapies other than URSO.

We at NIDDK share your desire to advance the science for PSC.

Unfortunately, we are limited by rules that govern how we distribute

funds that are appropriated to us by congress.  Decisions about

redirecting funds from one project to another are not a simple task and

may not be permissible because of federal regulations current laws.

But, please be assured that we at NIDDK will do everything we can to

work with Dr. Lindor to channel the funds allocated for his present

study into advancing the science of PSC.    

I have taken the liberty of including Dr. Lindor on this email - I hope

you don't mind.  Dr. Lindor and I have been colleagues for a long time

and share your concerns and passion for finding new treatments for PSC

and other serious liver diseases.  He can actually give you more advice

than I am allowed to give on how to make PSC a national priority and

thus, find new funds and advance the science of finding new treatments

for PSC.  

Best regards,

Pat

R. Robuck, Ph.D., M.P.H.

Director, Clinical Trials Program

Division of Digestive Diseases and Nutrition

NIDDK

6707 Democracy Blvd., Room 659

Bethesda, MD   20892-5450

Telephone:

FAX:

Email: pr132q@...

[Guest guest]

You are so welcome, Lori. Your dad will be o.k.And as you said we will

investigate other studies, of course.

 

Varices were one of the negative effects that my study coordinator told me

about. It is  bleeding in the Esophogues and it usually happens in stage 4 of

the disease, i guess. I will look for a complete definition and get back to you.

I have not had a chance to read the rest of e-mails, so i do not know yet if

some one has given you a good definition of it.

 

From: Lori

Subject: Re: URSO study stopped-met with Dr. Lindor today

To: @ yahoogroups. com

Date: Tuesday, July 1, 2008, 2:03 AM

My Dad had his yearly appointment at Mayo Clinic with Dr. Lindor.  My Dad has

been taking the URSO medicine since  around 1996-97 with his PSC diagnosis in

1996.  Dr. Lindor explained, that  the study has shown that URSO has caused very

negative effects  to the liver and that is why the study has been discontinued. 

My Dad is devastated by this news.  Dr. Lindor seemed very concerned & down

cast and didn't have much to say aside from the discontinued study and

why.  Does anyone have anything positive that I can share with my Dad? Does

anyone know specifically what URSO does to the liver to cause this negative

effect? What does it do to the liver? He had so much hope in this medicine.  His

liver tests always came back only slightly elevated each year but I guess the

liver test results can come back good but the URSO can still be causing serious

liver damage and/or  progress the disease faster.  Anything I can share

with

my Dad would be appreciated.  Does anyone know of any other studies that will be

starting or talk of ones?  If anyone is still taking URSO, (STOP). Thanks a lot.

 

Lori A.

 

" Aggressively Pursuing Solutions To Your Real Estate Needs! "

 

First Weber Group

Cell:

1507 E. Sunset Drive

Waukesha, WI  53189

LoriUSA@ Yahoo.com

www.Lori.FirstWeber .com

 

E-mail to the NIH

The following is the e-mail i received back from the NIH.  I hope everyone is

following Dr. Lindor's advice to contact the NIH to support funding of research

on PSC.  The more e-mails the better.

 

I hope this finds everyone well!

 

take care,

 

Ross Heil

 

 

 

Dear Ross,

Thank you for taking the time to write to me and to share your personal

story.  I know it must be difficult to be diagnosed with PSC and UC but

it looks like you are channeling your energies in the right direction.

We, too, hope that you will complete your studies and go on to research

PSC.  We can use all of the help that we can muster in studying this

disease!

I am sure that you are disappointed that Dr. Lindor's high dose URSO

study ended the way it did.   But as you know, even " negative " studies

have some positive results.  Dr. Lindor and his colleagues did an

excellent job of very carefully conducting this clinical trial and they

have collected a wealth of data that will be used beyond answering the

question about URSO.  While it wasn't the result that we all wanted, it

does answer an important question:  dose high dose URSO benefit patients

with PSC?  Now that we think we know the answer, those patients taking

high dose URSO can stop - why take an expensive drug that doesn't appear

to be of benefit?  It also is an opportunity for clinicians and

researchers to look for new/other therapies other than URSO.

We at NIDDK share your desire to advance the science for PSC.

Unfortunately, we are limited by rules that govern how we distribute

funds that are appropriated to us by congress.  Decisions about

redirecting funds from one project to another are not a simple task and

may not be permissible because of federal regulations current laws.

But, please be assured that we at NIDDK will do everything we can to

work with Dr. Lindor to channel the funds allocated for his present

study into advancing the science of PSC.    

I have taken the liberty of including Dr. Lindor on this email - I hope

you don't mind.  Dr. Lindor and I have been colleagues for a long time

and share your concerns and passion for finding new treatments for PSC

and other serious liver diseases.  He can actually give you more advice

than I am allowed to give on how to make PSC a national priority and

thus, find new funds and advance the science of finding new treatments

for PSC.  

Best regards,

Pat

R. Robuck, Ph.D., M.P.H.

Director, Clinical Trials Program

Division of Digestive Diseases and Nutrition

NIDDK

6707 Democracy Blvd., Room 659

Bethesda, MD   20892-5450

Telephone:

FAX:

Email: pr132q@...

[Guest guest]

No, nobody has sent any info yet. 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

E-mail to the NIHThe following is the e-mail i received back from the NIH. I hope everyone is following Dr. Lindor's advice to contact the NIH to support funding of research on PSC. The more e-mails the better. I hope this finds everyone well! take care, Ross Heil Dear Ross,Thank you for taking the time to write to me and to share your personalstory. I know it must be difficult to be diagnosed with PSC and UC butit looks like you are channeling your energies in the right direction.We, too, hope that you will complete your studies and go on to

researchPSC. We can use all of the help that we can muster in studying thisdisease!I am sure that you are disappointed that Dr. Lindor's high dose URSOstudy ended the way it did. But as you know, even "negative" studieshave some positive results. Dr. Lindor and his colleagues did anexcellent job of very carefully conducting this clinical trial and theyhave collected a wealth of data that will be used beyond answering thequestion about URSO. While it wasn't the result that we all wanted, itdoes answer an important question: dose high dose URSO benefit patientswith PSC? Now that we think we know the answer, those patients takinghigh dose URSO can stop - why take an expensive drug that doesn't appearto be of benefit? It also is an opportunity for clinicians andresearchers to look for new/other therapies other than URSO.We at NIDDK share your

desire to advance the science for PSC.Unfortunately, we are limited by rules that govern how we distributefunds that are appropriated to us by congress. Decisions aboutredirecting funds from one project to another are not a simple task andmay not be permissible because of federal regulations current laws.But, please be assured that we at NIDDK will do everything we can towork with Dr. Lindor to channel the funds allocated for his presentstudy into advancing the science of PSC. I have taken the liberty of including Dr. Lindor on this email - I hopeyou don't mind. Dr. Lindor and I have been colleagues for a long timeand share your concerns and passion for finding new treatments for PSCand other serious liver diseases. He can actually give you more advicethan I am allowed to give on how to make PSC a national priority andthus, find new funds and advance the science

of finding new treatmentsfor PSC. Best regards,Pat R. Robuck, Ph.D., M.P.H.Director, Clinical Trials ProgramDivision of Digestive Diseases and NutritionNIDDK6707 Democracy Blvd., Room 659Bethesda, MD 20892-5450Telephone: FAX: Email: pr132q@...