Mild PSC but Stage 2 liver disease?

[Guest guest]

Confused a bit here. I had my ERCP done on June 26 and the gastro doc said it

was

the mildest form he's ever seen. It was the first time he had to consult with

the

radiologist to be sure. I went away from that appointment thinking that maybe

it

meant my disease was progressing slowly and that I'd be looking at a longer time

line

to transplant.

Yesterday I met with the liver doc (same hospital) and he said that although the

beading in the ducts was slight that my liver disease is at stage 2. That

surprised me

a bit. I asked some questions, but I still have some confusion. This seems

like a

contradiction to me.

Can anyone shed some light on what this means? Am I looking at a shorter time

to

transplant then? How long does it typically take to get from stage 2 to 4?

Thanks, as always...

PSC June 2006

[Guest guest]

> Confused a bit here. I had my ERCP done on June 26 and the gastro

doc said it was

> the mildest form he's ever seen. ...

>

> Yesterday I met with the liver doc (same hospital) and he said that

although the

> beading in the ducts was slight that my liver disease is at stage 2.

...

> Am I looking at a shorter time to transplant then?

> How long does it typically take to get from stage 2 to 4?

,

With your recent diagnosis of PSC last month you don't yet have a

history that would reveal how slowly (or fast) your PSC is

progressing. The transition from the minor damage of stage 2 to full

blown cirrhosis usually takes quite a while with PSC. 10 to 30 years

would my guess. Taking ursodiol at your early stage may increase that

time, but that hasn't been proven yet.

It sounds to me like your ERCP did not reveal many strictures in your

main bile ducts. I interpert that to mean that your PSC is more of the

small duct variety, which is usually not as severe as the type that

causes large duct damage.

I don't recall you reporting any cholangitis attacks recently. Are

they still occurring or have you been taking antibiotics to get them

under contol? Do you have a plan in place to deal with future attacks?

Preventing attacks may be one of the best things you can do for your

liver.

Tim R

[Guest guest]

> Confused a bit here. I had my ERCP done on June 26 and the gastro

doc said it was

> the mildest form he's ever seen. ...

>

> Yesterday I met with the liver doc (same hospital) and he said that

although the

> beading in the ducts was slight that my liver disease is at stage 2.

...

> Am I looking at a shorter time to transplant then?

> How long does it typically take to get from stage 2 to 4?

,

With your recent diagnosis of PSC last month you don't yet have a

history that would reveal how slowly (or fast) your PSC is

progressing. The transition from the minor damage of stage 2 to full

blown cirrhosis usually takes quite a while with PSC. 10 to 30 years

would my guess. Taking ursodiol at your early stage may increase that

time, but that hasn't been proven yet.

It sounds to me like your ERCP did not reveal many strictures in your

main bile ducts. I interpert that to mean that your PSC is more of the

small duct variety, which is usually not as severe as the type that

causes large duct damage.

I don't recall you reporting any cholangitis attacks recently. Are

they still occurring or have you been taking antibiotics to get them

under contol? Do you have a plan in place to deal with future attacks?

Preventing attacks may be one of the best things you can do for your

liver.

Tim R

[Guest guest]

> Confused a bit here. I had my ERCP done on June 26 and the gastro

doc said it was

> the mildest form he's ever seen. ...

>

> Yesterday I met with the liver doc (same hospital) and he said that

although the

> beading in the ducts was slight that my liver disease is at stage 2.

...

> Am I looking at a shorter time to transplant then?

> How long does it typically take to get from stage 2 to 4?

,

With your recent diagnosis of PSC last month you don't yet have a

history that would reveal how slowly (or fast) your PSC is

progressing. The transition from the minor damage of stage 2 to full

blown cirrhosis usually takes quite a while with PSC. 10 to 30 years

would my guess. Taking ursodiol at your early stage may increase that

time, but that hasn't been proven yet.

It sounds to me like your ERCP did not reveal many strictures in your

main bile ducts. I interpert that to mean that your PSC is more of the

small duct variety, which is usually not as severe as the type that

causes large duct damage.

I don't recall you reporting any cholangitis attacks recently. Are

they still occurring or have you been taking antibiotics to get them

under contol? Do you have a plan in place to deal with future attacks?

Preventing attacks may be one of the best things you can do for your

liver.

Tim R

[Guest guest]

jglr23 wrote:

> Can anyone shed some light on what this means? Am I looking at a

> shorter time to

> transplant then? How long does it typically take to get from stage 2 to 4?

>

I'm sure someone can jump in with the technical definitions of the

different stages of liver disease, but the general answer to your

question is that staging isn't a particularly reliable way of monitoring

PSC.

For instance I've probably been at stage 4 for the about last six years

(I figured that out by reading the report from my biopsy back in '99 or

2000... my hepatologist didn't even tell me what stage I was... he said

he doesn't really pay much attention to in PSC patients since it doesn't

tell him that much). The main point is that some people end up moving

through the stages pretty rapidly and get a transplant quickly, others

can sit at the same stage for many years.

Just another one of those unpredictable things about this disease!

Hope that helps a bit (even though all I really said was " I don't know " !)

athan