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

[Guest guest]

Lori,

 

I am so sorry that your dad is so devastated by the news. I don't blame him. I

wish that he did have some knowledge earlier, that URSO was not working as first

was thought. Doctor Lindor himself was mentioning it in his research papers. But

i don't believe that anyone would have imagined that the drug will have negative

effects, and vey negative he, doctor Lindor has told you. I think he needs to at

least tell us, the study group what these effects are. I did learn a very bad

one from my study coordinator today. The development of varices. Myself, i have

been wondering for some time now, why i have been feeling much sicker for the

last few months. Excruciating pain and very frequent cholangitis attacks. Also

my liver enzymes did start to rise after significantly declining. All of that

but never thought that the outcome will be negative and that negative.

 

Positive i hope: I know that you did want to hear something positive. There is a

good number of studies going on everywhere. Here in the states and

internationally, too. Dr. Chapman in England had a good outcome with a moderate

dose of Urso, i read. I don't know what dosage your dad was on. But if it is

moderate or mild then that is may be good news to him and if so then at least

he can be comforted that he was not on the high dose, for example. Also, Mayo

will be starting one, as soon as the NIH allows them i guess. Before i got

enrolled in this study, i went into a very small, one year open label study with

doctor Lindor. It was for CELLCEPT. An immunosuppressant drug but trialed with,

on PSC. They might be looking into that again but in some big scale, controlled

study. And there probably is a big number of similar drugs to be assessed and

tried.

 

My best wishes to your dad. I hope that there would be a more positive and

uplifting news than this one. Take care.

 

 

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

To:

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

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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@...