Re: Recent Diagnosis/How Much Time?

[Guest guest]

Hi:

As mentioned earlier it's unpredictable.

I got diagnosed with UC and PSC in 1986 (When I was 20).

I had a subtotal collectomy my with a Illeostomy in 1998

that cured the UC. (I also have hypothyroidism, Asthma, etc. -

I'm an autoimmune disease case study..

My Dr's say I'm 'unusual' since I've had PSC for so long

but MRCP's look fairly normal - Almost like the disease

was arrested for a while. My blood tests are off, but

have been off only by a little for maybe the past 8 years.

(They were way, way off when I got diagnosed).

I've had problems with itching for almost the past year after

not having any issues (with itching) for many years. I'm trying

all sorts of stuff for this as the normal regimens (Questran, Rifampin)

don't seem to work well enough (Questran used to work great).

I'm getting a liver biopsy soon (I haven't had one in a while) since

my Dr says it's the only way to accuratly determine the

'stage' you are in. I'm a little worried about that.

My advice is not to give up. Try to be as healthy as you

can otherwise and keep a good attitude. Also, get a good, good

GI. One you can be comfortable with. I had a 'local' Gi that retired

last year. I also have been seeing a Dr who specializes in liver

disorders in Boston for the 21 years (More recently due to the itching).

Good luck.

[Guest guest]

Who do you see in Boston? Marshall Kaplan? He's great, I've been to see him for

second

opinions twice. He's so experienced, in his 70's now, I think. I see Doug

Pleskow, at

BIDMC, who is an outstanding endoscopist.

I'm surprised your Dr says it's unusual to go 21 years. Unlike a lot of people,

I was told by

the regular GI at diagnosis that I would need a transplant in 20-30 years, and

it certainly

looks like I'm on course for that. I've gone 15 years, still asymptomatic, but

started to

need bile ducts opened to stay that way.

I agree with Barb about the biopsy. Ask him if any of the information obtained

from the

biopsy will alter your course of treatment. Does the information you would get

justify the

risks from the biopsy? Make him present his arguments. The biopsy won't help

with telling

whether you need a duct opened (MRCP, followed by ERCP if necessary, will tell

that). The

biopsy won't detect bile duct cancer, unless it's humongous, and if it were, you

would be

able to tell by CA19-9 and other tests by then. If they biopsy the right lobe,

and it's stage

4, but the left lobe is stage 2, what does that mean? Your left lobe could

compensate for

years to come.

Sorry to hear about the itching. I have no experience, but some folks here have

had good

results with medical UV treatments, or with tanning beds.

Martha (MA)

UC 1979, PSC 1992

> I got diagnosed with UC and PSC in 1986 (When I was 20).

> My Dr's say I'm 'unusual' since I've had PSC for so long

> but MRCP's look fairly normal -> I'm getting a liver biopsy soon (I haven't

had one in a

while) since

> my Dr says it's the only way to accuratly determine the

> 'stage' you are in.

I also have been seeing a Dr who specializes in liver

> disorders in Boston for the 21 years (More recently due to the itching).

>

> Good luck.

>

[Guest guest]

Who do you see in Boston? Marshall Kaplan? He's great, I've been to see him for

second

opinions twice. He's so experienced, in his 70's now, I think. I see Doug

Pleskow, at

BIDMC, who is an outstanding endoscopist.

I'm surprised your Dr says it's unusual to go 21 years. Unlike a lot of people,

I was told by

the regular GI at diagnosis that I would need a transplant in 20-30 years, and

it certainly

looks like I'm on course for that. I've gone 15 years, still asymptomatic, but

started to

need bile ducts opened to stay that way.

I agree with Barb about the biopsy. Ask him if any of the information obtained

from the

biopsy will alter your course of treatment. Does the information you would get

justify the

risks from the biopsy? Make him present his arguments. The biopsy won't help

with telling

whether you need a duct opened (MRCP, followed by ERCP if necessary, will tell

that). The

biopsy won't detect bile duct cancer, unless it's humongous, and if it were, you

would be

able to tell by CA19-9 and other tests by then. If they biopsy the right lobe,

and it's stage

4, but the left lobe is stage 2, what does that mean? Your left lobe could

compensate for

years to come.

Sorry to hear about the itching. I have no experience, but some folks here have

had good

results with medical UV treatments, or with tanning beds.

Martha (MA)

UC 1979, PSC 1992

> I got diagnosed with UC and PSC in 1986 (When I was 20).

> My Dr's say I'm 'unusual' since I've had PSC for so long

> but MRCP's look fairly normal -> I'm getting a liver biopsy soon (I haven't

had one in a

while) since

> my Dr says it's the only way to accuratly determine the

> 'stage' you are in.

I also have been seeing a Dr who specializes in liver

> disorders in Boston for the 21 years (More recently due to the itching).

>

> Good luck.

>

[Guest guest]

Who do you see in Boston? Marshall Kaplan? He's great, I've been to see him for

second

opinions twice. He's so experienced, in his 70's now, I think. I see Doug

Pleskow, at

BIDMC, who is an outstanding endoscopist.

I'm surprised your Dr says it's unusual to go 21 years. Unlike a lot of people,

I was told by

the regular GI at diagnosis that I would need a transplant in 20-30 years, and

it certainly

looks like I'm on course for that. I've gone 15 years, still asymptomatic, but

started to

need bile ducts opened to stay that way.

I agree with Barb about the biopsy. Ask him if any of the information obtained

from the

biopsy will alter your course of treatment. Does the information you would get

justify the

risks from the biopsy? Make him present his arguments. The biopsy won't help

with telling

whether you need a duct opened (MRCP, followed by ERCP if necessary, will tell

that). The

biopsy won't detect bile duct cancer, unless it's humongous, and if it were, you

would be

able to tell by CA19-9 and other tests by then. If they biopsy the right lobe,

and it's stage

4, but the left lobe is stage 2, what does that mean? Your left lobe could

compensate for

years to come.

Sorry to hear about the itching. I have no experience, but some folks here have

had good

results with medical UV treatments, or with tanning beds.

Martha (MA)

UC 1979, PSC 1992

> I got diagnosed with UC and PSC in 1986 (When I was 20).

> My Dr's say I'm 'unusual' since I've had PSC for so long

> but MRCP's look fairly normal -> I'm getting a liver biopsy soon (I haven't

had one in a

while) since

> my Dr says it's the only way to accuratly determine the

> 'stage' you are in.

I also have been seeing a Dr who specializes in liver

> disorders in Boston for the 21 years (More recently due to the itching).

>

> Good luck.

>