Re: Can I drink........

[Guest guest]

Unfortunately all cases are different. I have not heard of a study

that proves that PSC was caused by alcohol or that PSC has worsened

because of alcohol use.

An example is my wife. She has PSC that causes severe itching

(pruritis)on a daily basis and very poor quality of life because of

this. Prescription drugs give no relief and she is now on the

transplant list at UCSF because of this. Her MELD score, however, is

only 6 (the lowest) and the MELD gives no " credit " for pruritis

because the MELD authors determined that " Quality of Life " is not

an " Exception " for a transplant. She has been told that it can be 20

years before she qualifies for an actual transplant.

Before being listed she enjoyed an occasional glass of wine, that

helped cope with the horrible itching. However in order to be accepted

on the transplant list (for what it's worth) she was required to sign

an agreement to not use alcohol (even the " alcohol free " kind), and a

number of prescription drugs. They do random testing for this.

[Guest guest]

I also had to sign a statement that I would abstain from alcohol and

any illicit drugs in order to stay listed. Like you, I was also told

that even " alcohol free " beverages can contain trace amounts of

alcohol that will show up on the random tests that we receive.

While I'm told that there is no proven PSC-Alcohol linkage, I think

the concern is that given the dearth of transplantable livers, anyone

who might potentially abuse alcohol should not qualify for transplant.

This doesn't imply that anyone who drinks the occasional glass of

wine is an alcoholic. Any alcohol is going to stress the liver,

causing undue strain on an organ that has already been traumatized by

going through the transplant process.

I've been on the wagon ever since I got listed, and it isn't bad at

all. I was never much of a drinker anyway, but abstaining was easier

than I thought it would be. It's a small sacrifice to have a chance

at a life-saving transplant.

Tom

>

> Unfortunately all cases are different. I have not heard of a study

> that proves that PSC was caused by alcohol or that PSC has worsened

> because of alcohol use.

>

> An example is my wife. She has PSC that causes severe itching

> (pruritis)on a daily basis and very poor quality of life because of

> this. Prescription drugs give no relief and she is now on the

> transplant list at UCSF because of this. Her MELD score, however, is

> only 6 (the lowest) and the MELD gives no " credit " for pruritis

> because the MELD authors determined that " Quality of Life " is not

> an " Exception " for a transplant. She has been told that it can be 20

> years before she qualifies for an actual transplant.

>

> Before being listed she enjoyed an occasional glass of wine, that

> helped cope with the horrible itching. However in order to be accepted

> on the transplant list (for what it's worth) she was required to sign

> an agreement to not use alcohol (even the " alcohol free " kind), and a

> number of prescription drugs. They do random testing for this.

>

[Guest guest]

The major concern about alcohol use with PSC is that it appears to be

associated with an increased risk of cholangiocarcinoma:

http://www.ncbi.nlm.nih.gov/sites/entrez/10613720

Chalasani N, Baluyut A, Ismail A, Zaman A, Sood G, Ghalib R, McCashland

TM, Reddy KR, Zervos X, Anbari MA, Hoen H (2000) Cholangiocarcinoma in

patients with primary sclerosing cholangitis: a multicenter case-

control study. Hepatology 31: 7-11.

" Alcohol consumption was significantly associated with CCA in patients

with PSC (odds ratio: 2.95; 95% CI: 1.04-8.3). "

Dave R.

> I have not heard of a study that proves that PSC was caused by

alcohol or that PSC has worsened because of alcohol use.

[Guest guest]

>

> The major concern about alcohol use with PSC is that it appears to

be

> associated with an increased risk of cholangiocarcinoma:

>

> http://www.ncbi.nlm.nih.gov/sites/entrez/10613720

>

> Chalasani N, Baluyut A, Ismail A, Zaman A, Sood G, Ghalib R,

McCashland

> TM, Reddy KR, Zervos X, Anbari MA, Hoen H (2000) Cholangiocarcinoma

in

> patients with primary sclerosing cholangitis: a multicenter case-

> control study. Hepatology 31: 7-11.

>

> " Alcohol consumption was significantly associated with CCA in

patients

> with PSC (odds ratio: 2.95; 95% CI: 1.04-8.3). "

>

> Dave R.

>

>Thanks Dave. I guese this whole transplant issue is frustrating for

everyone. She has small duct PSE that has a low probability of

causing CCA, which is some good news. She has no chance of a

transplant even though she is in constant misery from this form of

PSC. This is due to the wisdom of Mayo. There are reported incidents

of suicide for this condition,as I can imagine.

A person would have a better shot at a transplant if they almost

drank themselves to death.

Joe, husband of Jan

[Guest guest]

>

> I also had to sign a statement that I would abstain from alcohol and

> any illicit drugs in order to stay listed.

Unfortunately, her list also contains a number of prescription drugs

that would help. Example: Ambian. Because of her itching, she is lucky

to get two or three hours of sleep per night.

[Guest guest]

Hi Joe;

Has Jan tried rifampin (rifampicin)? This worked wonders for my son; it

took away his itching within a few days. Apparently rifampin activates

a receptor (the pregnane X receptor; PXR) in the liver that then

induces the expression of a number of enzymes involved in bile

transport and metabolism, facilitating detoxification of itch-causing

bile acids. Some researchers suggest that rifampin acts in a

complementary way with ursodeoxycholic acid in stimulating bile

transport and deoxtification systems in cholestatic liver disease like

PSC:

Marschall HU, Wagner M, Zollner G, Fickert P, Diczfalusy U, Gumhold J,

Silbert D, Fuchsbichler A, Benthin L, Grundstrom R, Gustafsson U,

Sahlin S, Einarsson C, Trauner M 2005 Complementary stimulation of

hepatobiliary transport and detoxification systems by rifampicin and

ursodeoxycholic acid in humans. Gastroenterology 129: 476-485.

http://www.ncbi.nlm.nih.gov/pubmed/16083704

If she hasn't tried this, I can strongly recommend it to try to

overcome this frustrating and debilitating symptom.

Best regards, and I hope that Jan can get relief from the itch soon!

Dave R.

>Thanks Dave. I guese this whole transplant issue is frustrating for

> everyone. She has small duct PSE that has a low probability of

> causing CCA, which is some good news. She has no chance of a

> transplant even though she is in constant misery from this form of

> PSC. This is due to the wisdom of Mayo. There are reported incidents

> of suicide for this condition,as I can imagine.

[Guest guest]

Seriously? No alcohol whatsoever? My doc didn't mention anything

about this. I rarely drink anyway, but I LOVE wine sauces and cooking

with cooking wine. Does this only apply to people on transplant lists

and post-transplant patients?

Suzanna

[Guest guest]

Well, I can totally understand folowing the protocol. I mean, I would

do whatever it takes to live, you know. It would just be a bummer --

particularly not having wine sauces! But if it means another day,

week, month, year, decade with my kids, then I'll do it with a smile

(most days)! : )

My doc said that diet wouldn't make a difference in the progress of

my PSC. Is the no alcohol rule just for transplant centers, or is it

also better for anyone with PSC regardless of the stage they are in?

Hoping that makes sense.

I also wonder about tylenol. I take that on occassion and have heard

that it is hard on the liver. Is it best to steer clear of it?

I'll be asking my hepatologist that when I see him/her this week, but

just wanted to know what people here have experienced.

-- In , Baker wrote:

>

> The hospital/transplant center that I go to and am on their

transplant list do not tolerate any kind of alcohol. This even

includes mouthwash, toothpaste, etc. We are subject to random drug

test. They want to be sure we are going to take good care of the

organ we hopefully get. I have never been much of a drinker anyway

and feel this is a very small price to pay. If you feel you need to

drink, try some sparkling grape or apple juice. If we continue to

live in this area after tx and should I ever need another liver I

have been informed that I will continue with the random drug/alcohol

tests. So, I will need to be a t-totaler. I can live with that.

>

>

> OKC

>

>

> ---------------------------------

> Never miss a thing. Make Yahoo your homepage.

>

[Guest guest]

Now that I think about it, neither my gastroenterologist nor my

hepatologist has ever said one word to me about alcohol consumption.

Doesn't matter much anymore though. I used to drink occasionally but

within the past two years I've found that even one or two drinks

makes me ill. Years ago (especially during college), I never thought

I'd be saying this, but I never touch the stuff. Although I would

hate to have to give up cooking with wine. Whenever a recipe calls

for vinegar, I usually substitute wine.

>

> Seriously? No alcohol whatsoever? My doc didn't mention anything

> about this. I rarely drink anyway, but I LOVE wine sauces and

cooking

> with cooking wine. Does this only apply to people on transplant

lists

> and post-transplant patients?

>

> Suzanna

>

[Guest guest]

My transplant doc said no more that 1000mg of tylenol in a 24 hour

period. But absolutly no Motrin or Aleve etc. Since they are hard

on the kidneys and having liver disease is also hard on the kidneys.

One day at a time,

PSC 5/07 Listed

> >

> > The hospital/transplant center that I go to and am on their

> transplant list do not tolerate any kind of alcohol. This even

> includes mouthwash, toothpaste, etc. We are subject to random drug

> test. They want to be sure we are going to take good care of the

> organ we hopefully get. I have never been much of a drinker anyway

> and feel this is a very small price to pay. If you feel you need to

> drink, try some sparkling grape or apple juice. If we continue to

> live in this area after tx and should I ever need another liver I

> have been informed that I will continue with the random

drug/alcohol

> tests. So, I will need to be a t-totaler. I can live with that.

> >

> >

> > OKC

> >

> >

> > ---------------------------------

> > Never miss a thing. Make Yahoo your homepage.

> >

>

[Guest guest]

I've has PSC with colitis for a good while now and had always been

told to avoid tylenol. I have a new doctor now who says no more than

500mg of tylenol. She also says no Aleve, Ibuprofin, Motrin, etc.

The biggest concern with tylenol on the liver is when it is mixed with

alcohol. So don't drink (at all if possible ) around the time before

or after taking tylenol.

> > >

> > > The hospital/transplant center that I go to and am on their

> > transplant list do not tolerate any kind of alcohol. This even

> > includes mouthwash, toothpaste, etc. We are subject to random drug

> > test. They want to be sure we are going to take good care of the

> > organ we hopefully get. I have never been much of a drinker anyway

> > and feel this is a very small price to pay. If you feel you need to

> > drink, try some sparkling grape or apple juice. If we continue to

> > live in this area after tx and should I ever need another liver I

> > have been informed that I will continue with the random

> drug/alcohol

> > tests. So, I will need to be a t-totaler. I can live with that.

> > >

> > >

> > > OKC

> > >

> > >

> > > ---------------------------------

> > > Never miss a thing. Make Yahoo your homepage.

> > >

> >

>