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Hi ,

My name is Bob and I am a new Member of the Psc Disease. I have recently, been diagnosed

with the disease ( 2weeks ago). I have been in a state of numbness since .Doctors stated that there is not much they

can do to slow down the progression of Psc. I had an MRCP done where they found " millions of stones" which was cleared out.

and a stent was placed in one of the ducts. Six weeks later I had another MRCP with Spyglass Tech and the stent was removed. No stones

developed and I was clear. I am on a medicine called Ursodiol the doctor wants to bring me up to 4 pills a day for my body weight.

I was getting sick on the pill at first; nausea's,and I stopped taking it. But the doctor said lets try with your food then I'm now taking one pill a day for three weeks with meals then 2 pills for three weeks and so on until I reach 4 pills.

I do have some questions maybe some one can help me with:

Does categories of the disease exist. In other word my symptoms would be like a certain level? I don't know where I stand in respect with other people with PSC. How far am I along with my symptoms ( episodes of jaundice, high liver counts, and occasional pain on the right side. Strong enough pain that put me in the hospital in September).

My doctor put me on a low fat diet has anyone had success with this ? When were people getting new livers? What were there symptoms? Just how fast does the disease progress? Is everyone different in progression?

I am new to the group and to PSC. I asking for some help because I am a little to say the least distraught and worried.

I feel helpless right now..

Thank you for your time,

Bob Capobianco

Never miss a thing. Make Yahoo your homepage.

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Hi Bob welcome to the group. Sorry to hear of your diagnosis. I was

diagnosed in May of this year and this group has been very helpful.

I am sure that there are many that have lots more info than me, but

you may find www.unos.org helpful and www.liverfoundation.org.

Everyone progresses differently and some do not ever need a liver

transplant. Ursodiol is probably the most common medication used by

people with this disease and usually in large doses. My doctor at

Baylor All Saints said there really is not a current " ranking " for

this disease. There is a MELD score that is used my unos to rank who

is in most need of an liver when one becomes available.

>

> Hi ,

> My name is Bob and I am a new Member of the Psc Disease. I have

recently, been diagnosed

> with the disease ( 2weeks ago). I have been in a state of numbness

since .Doctors stated that there is not much they

> can do to slow down the progression of Psc. I had an MRCP done

where they found " millions of stones " which was cleared out.

> and a stent was placed in one of the ducts. Six weeks later I had

another MRCP with Spyglass Tech and the stent was removed. No stones

> developed and I was clear. I am on a medicine called Ursodiol the

doctor wants to bring me up to 4 pills a day for my body weight.

> I was getting sick on the pill at first; nausea's,and I stopped

taking it. But the doctor said lets try with your food then I'm now

taking one pill a day for three weeks with meals then 2 pills for

three weeks and so on until I reach 4 pills.

> I do have some questions maybe some one can help me with:

> Does categories of the disease exist. In other word my symptoms

would be like a certain level? I don't know where I stand in respect

with other people with PSC. How far am I along with my symptoms (

episodes of jaundice, high liver counts, and occasional pain on the

right side. Strong enough pain that put me in the hospital in

September).

> My doctor put me on a low fat diet has anyone had success with

this ? When were people getting new livers? What were there symptoms?

Just how fast does the disease progress? Is everyone different in

progression?

> I am new to the group and to PSC. I asking for some help because I

am a little to say the least distraught and worried.

> I feel helpless right now..

>

> Thank you for your time,

>

> Bob Capobianco

>

>

>

______________________________________________________________________

______________

> Never miss a thing. Make Yahoo your home page.

> http://www.yahoo.com/r/hs

>

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Hi Bob;

Welcome to the group. Sorry that your PSC diagnosis brings you here,

but glad that you found us. Try to hang in there with the ursodiol

for a while. It's likely to help thin your bile, and allow for better

bile flow, as long as you keep well hydrated.

When our son was diagnosed with PSC 4.5 years ago, his serum alanine

aminotransferase (ALT) and aspartate aminotransferase (ALT) returned

to near normal within a few weeks after taking ursodiol. His alkaline

phosphatase (ALP) (500 units at diagnosis) did not decline as rapidly

as his ALT and AST, but has slowly fallen back to near normal (now

150; 140 is the upper limit of 'normal') over the last 4.5 years.

We're not sure how much of this is due to ursodiol (he takes 2000

mg/day), or to other drugs and supplements he is also taking (asacol

for ulcerative colitis, rifampin for itching, vitamins, folic acid,

and fish oils). It may be a response to the combination?

The elevated ALT and AST are kind of a measure of how much damage to

the hepatocyte cells of the liver is ongoing. ALT and AST are made by

hepatocytes and released into the blood stream when hepatocytes are

damaged or die. This can occur when toxic bile acids build up in the

liver. Alkaline phosphatase (ALP) is more of a measure of the degree

of bile-duct blockage or injury. But the more important measures of

overall liver function are serum albumin (which is synthesized by the

liver), and international normalized ratio (INR) (which is a measure

of blood clotting ability; many blood clotting factors are produced

by the liver). ALT, AST, ALP and bilirubin can fluctuate quite a bit

depending on bile duct blockages. If these blockages are relieved,

these lab values may return to near normal, and your symptoms

(jaundice, upper right quadrant pain) may go way. So you can't really

tell how far you are along with the disease based on serum liver

enzyme values and symptoms. Some centers do liver biopsies to stage

the disease. They typically stage it based on how the liver cells and

bile ducts look under the microscope, and classify it into 4 stages,

with stage 4 being cirrhosis. But since you have not had a biopsy by

the sounds of it, I would doubt that it would be possible to tell you

what stage of PSC you may be in. The rate of progression seems to be

highly variable between individuals, and so we can't really make any

predictions there either. Sorry!

Our son was diagnosed at stage 2, over four years ago. Because he

hasn't had a biopsy since diagnosis, we're not sure if he has

progressed. His liver function tests now look very near normal, and

his serum albumin level is within the normal range. He's worked hard

to take his meds daily, and not drink any alcohol, to lay off fatty

foods (especially pizza), to try to eat small nutritious meals, and

to exercise, and keep hydrated. Fortunately, he has not had any

serious health problems since diagnosis time. And we hope it stays

that way.

We were also numb and in a state of shock when we found out that our

son had PSC and ulcerative colitis. We set about reading everything

we could about PSC and inflammatory bowel disease (IBD). The good

news is that there's a huge amount of progress being made in

understanding the genetic basis and mechanisms of autoimmune and

inflammatory diseases. Hopefully, with further research the IBD

mystery will soon be solved, and then researchers can begin to focus

more on the extra-intestinal manifestations, like PSC. Perhaps in 10

years there will be medications and treatments that we can't yet

imagine? It's the hope for a cure or a more effective treatment that

keeps me going. And for keeping hope alive, I can also thank the

members of this group, PSC Partners Seeking a Cure, and the

Foundation, to name but a few.

Best regards,

Dave R.

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,

You should put a copyright sign under your

writings. I saved this explanation fur future reference.

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of

Sent: Wednesday, December 12, 2007

07:10

To:

Subject: Re: Psc

questions

Hi Bob;

Welcome to the group. Sorry that your PSC diagnosis brings you here,

but glad that you found us. Try to hang in there with the ursodiol

for a while. It's likely to help thin your bile, and allow for better

bile flow, as long as you keep well hydrated.

When our son was diagnosed with PSC 4.5 years ago, his serum alanine

aminotransferase (ALT) and aspartate aminotransferase (ALT) returned

to near normal within a few weeks after taking ursodiol. His alkaline

phosphatase (ALP) (500 units at diagnosis) did not decline as rapidly

as his ALT and AST, but has slowly fallen back to near normal (now

150; 140 is the upper limit of 'normal') over the last 4.5 years.

We're not sure how much of this is due to ursodiol (he takes 2000

mg/day), or to other drugs and supplements he is also taking (asacol

for ulcerative colitis, rifampin for itching, vitamins, folic acid,

and fish oils). It may be a response to the combination?

The elevated ALT and AST are kind of a measure of how much damage to

the hepatocyte cells of the liver is ongoing. ALT and AST are made by

hepatocytes and released into the blood stream when hepatocytes are

damaged or die. This can occur when toxic bile acids build up in the

liver. Alkaline phosphatase (ALP) is more of a measure of the degree

of bile-duct blockage or injury. But the more important measures of

overall liver function are serum albumin (which is synthesized by the

liver), and international normalized ratio (INR) (which is a measure

of blood clotting ability; many blood clotting factors are produced

by the liver). ALT, AST, ALP and bilirubin can fluctuate quite a bit

depending on bile duct blockages. If these blockages are relieved,

these lab values may return to near normal, and your symptoms

(jaundice, upper right quadrant pain) may go way. So you can't really

tell how far you are along with the disease based on serum liver

enzyme values and symptoms. Some centers do liver biopsies to stage

the disease. They typically stage it based on how the liver cells and

bile ducts look under the microscope, and classify it into 4 stages,

with stage 4 being cirrhosis. But since you have not had a biopsy by

the sounds of it, I would doubt that it would be possible to tell you

what stage of PSC you may be in. The rate of progression seems to be

highly variable between individuals, and so we can't really make any

predictions there either. Sorry!

Our son was diagnosed at stage 2, over four years ago. Because he

hasn't had a biopsy since diagnosis, we're not sure if he has

progressed. His liver function tests now look very near normal, and

his serum albumin level is within the normal range. He's worked hard

to take his meds daily, and not drink any alcohol, to lay off fatty

foods (especially pizza), to try to eat small nutritious meals, and

to exercise, and keep hydrated. Fortunately, he has not had any

serious health problems since diagnosis time. And we hope it stays

that way.

We were also numb and in a state of shock when we found out that our

son had PSC and ulcerative colitis. We set about reading everything

we could about PSC and inflammatory bowel disease (IBD). The good

news is that there's a huge amount of progress being made in

understanding the genetic basis and mechanisms of autoimmune and

inflammatory diseases. Hopefully, with further research the IBD

mystery will soon be solved, and then researchers can begin to focus

more on the extra-intestinal manifestations, like PSC. Perhaps in 10

years there will be medications and treatments that we can't yet

imagine? It's the hope for a cure or a more effective treatment that

keeps me going. And for keeping hope alive, I can also thank the

members of this group, PSC Partners Seeking a Cure, and the

Foundation, to name but a few.

Best regards,

Dave R.

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Hi Bob,

Welcome to the group. I'm sorry to hear about your diagnosis, but

glad you found this resource, as so many of us have. It's been

valuable to me to share stories and know that others have shared in

our experiences. I encourage you to read as much of the available

literature as possible to find answers to your questions. Also,

after you read the available literature, don't stop asking questions

of your doctors. If they don't know the answers, ask them to find

out! Here is a link to the PSC literature website.

http://www.psc-literature.org/

Lastly, you'll hear this from others in the group, but I want to

reiterate it. Everyone responds differently to the disease. There

are people fortunate enough to be symtpom free after diagnosis.

Others progress differently, feeling the awful symptoms of itching,

pain, and eventually a liver transplant. It sounds like you have

laready experienced some pain, and had an ERCP. I'm sorry you have

to experience those things. Please know that there is a network of

us out here that are united in our empathy, caring, and support of

you and everyone else in this situation. In other words, you are not

alone in this. :)

Take care of yourself, and please let us know how youare doing.

- Severin

Severin Garanzuay

PSC, UC 2007

>

> Hi ,

> My name is Bob and I am a new Member of the Psc Disease. I have

recently, been diagnosed

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