The natural history of small-duct PSC

[Guest guest]

We aimed at determining the natural history and

long-term outcomes of a large number of patients with small-duct PSC………

http://www.ncbi.nlm.nih.gov/pubmed/18395078?dopt=AbstractPlus & otool=biowizard

Barb in Texas - Together in the Fight, Whatever it

Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

Barb -- can you clarify for me the difference between large duct and small duct?

Are we

talking intra vs. extra hepatic involvement here? I have a dominant stricture,

hence my

concern. I can't leave my little ones mama-less.

Colleen

> We aimed at determining the natural history and long-term outcomes of a

> large number of patients with small-duct PSC...

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

Barb -- can you clarify for me the difference between large duct and small duct?

Are we

talking intra vs. extra hepatic involvement here? I have a dominant stricture,

hence my

concern. I can't leave my little ones mama-less.

Colleen

> We aimed at determining the natural history and long-term outcomes of a

> large number of patients with small-duct PSC...

> Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

> Barb -- can you clarify for me the difference between large duct and

small duct? Are we

> talking intra vs. extra hepatic involvement here? I have a dominant

stricture, hence my

> concern. I can't leave my little ones mama-less.

Colleen,

Small duct PSC does not involve strictures that can be seen via ERCP,

either in or outside the liver. Microscopic changes are consistent

with PSC and all other possible diagnoses must be ruled out to arrive

at the small duct diagnosis.

By the way, welcome back.

Tim R, 3rd tx 7/7/07

[Guest guest]

I thought my doc said I had small duct PSC, but maybe I'm mistaken. I

was diagnosed by MRCP (beading in the ducts). He said ERCP would be

useless at this point because they wouldn't be able to get up in where

the dilation/inflamation is. Am I wrong in thinking that because it's

in the deep, smaller ducts of the liver that I have small duct psc?

I'll have to discuss with doc again, I guess...

Also, is this disease definitely hereditary? I read that in the

newspaper article just posted and now I'm concerned for my kids.

Suzanna

> Small duct PSC does not involve strictures that can be seen via ERCP,

> either in or outside the liver. Microscopic changes are consistent

> with PSC and all other possible diagnoses must be ruled out to arrive

> at the small duct diagnosis.

>

[Guest guest]

I thought my doc said I had small duct PSC, but maybe I'm mistaken. I

was diagnosed by MRCP (beading in the ducts). He said ERCP would be

useless at this point because they wouldn't be able to get up in where

the dilation/inflamation is. Am I wrong in thinking that because it's

in the deep, smaller ducts of the liver that I have small duct psc?

I'll have to discuss with doc again, I guess...

Also, is this disease definitely hereditary? I read that in the

newspaper article just posted and now I'm concerned for my kids.

Suzanna

> Small duct PSC does not involve strictures that can be seen via ERCP,

> either in or outside the liver. Microscopic changes are consistent

> with PSC and all other possible diagnoses must be ruled out to arrive

> at the small duct diagnosis.

>

[Guest guest]

Like many autoimmune diseases, there is good evidence of a genetic component. On the other hand, there also may need to be an environmental trigger. I'm the only one of my family (3 brothers, a sister, numerous nieces and nephews, parents, grandparents, uncles, aunts, etc.) with ulcerative colitis or PSC. If I remember correctly, Barby has experienced a much stronger correlation - cousin?

Arne

56 - UC 1977, PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of zus888

....Also, is this disease definitely hereditary? I read that in the

newspaper article just posted and now I'm concerned for my kids.

Suzanna

[Guest guest]

Like many autoimmune diseases, there is good evidence of a genetic component. On the other hand, there also may need to be an environmental trigger. I'm the only one of my family (3 brothers, a sister, numerous nieces and nephews, parents, grandparents, uncles, aunts, etc.) with ulcerative colitis or PSC. If I remember correctly, Barby has experienced a much stronger correlation - cousin?

Arne

56 - UC 1977, PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of zus888

....Also, is this disease definitely hereditary? I read that in the

newspaper article just posted and now I'm concerned for my kids.

Suzanna

[Guest guest]

Like many autoimmune diseases, there is good evidence of a genetic component. On the other hand, there also may need to be an environmental trigger. I'm the only one of my family (3 brothers, a sister, numerous nieces and nephews, parents, grandparents, uncles, aunts, etc.) with ulcerative colitis or PSC. If I remember correctly, Barby has experienced a much stronger correlation - cousin?

Arne

56 - UC 1977, PSC 2000

Alive and well in Minnesota

________________________________

From: [mailto: ] On Behalf Of zus888

....Also, is this disease definitely hereditary? I read that in the

newspaper article just posted and now I'm concerned for my kids.

Suzanna

[Guest guest]

If I remember correctly, Barby has experienced a much stronger correlation - cousin?>>>> Good memory! It is a 1st cousin to be exact. We are 1 month apart in age but didn't grow up near each other. He has had 2 liver tx at Baylor in TX. There are family members who have other autoimmune diseases but no others with PSC. My brother was dx with UC about the same time I was. He was 16, I was 11. He does not have PSC though. Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28

years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandbaby due 10/08 and 1 golden retriever

[Guest guest]

If I remember correctly, Barby has experienced a much stronger correlation - cousin?>>>> Good memory! It is a 1st cousin to be exact. We are 1 month apart in age but didn't grow up near each other. He has had 2 liver tx at Baylor in TX. There are family members who have other autoimmune diseases but no others with PSC. My brother was dx with UC about the same time I was. He was 16, I was 11. He does not have PSC though. Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28

years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandbaby due 10/08 and 1 golden retriever

[Guest guest]

If I remember correctly, Barby has experienced a much stronger correlation - cousin?>>>> Good memory! It is a 1st cousin to be exact. We are 1 month apart in age but didn't grow up near each other. He has had 2 liver tx at Baylor in TX. There are family members who have other autoimmune diseases but no others with PSC. My brother was dx with UC about the same time I was. He was 16, I was 11. He does not have PSC though. Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28

years , 5 sons, 2 daughters in law, 1 granddaughter, 1 grandbaby due 10/08 and 1 golden retriever

[Guest guest]

there also may need to be an environmental trigger. >>> I should have included this in the previous message. As far as UC goes, I definitely think there is an environmental factor. I grew up in a small town in MO. When the water source changed many cases of UC started appearing. I only knew this because my dad was the town's pharmacist. There were about a dozen cases in this town with a population of about 1600 not counting livestock. Barby - KS UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07married 28 years , 5 sons, 2 daughters in law, 1 granddaughter,

1 grandbaby due 10/08 and 1 golden retriever

[Guest guest]

>

> As far as UC goes, I definitely think there is an environmental

factor. I grew up in a small town in MO. When the water source

changed many cases of UC started appearing.

When the cause of UC/PSC is finally established, I will be astonished

if H. Pylori or one of its cousins isn't implicated in some capacity.

[Guest guest]

>

> As far as UC goes, I definitely think there is an environmental

factor. I grew up in a small town in MO. When the water source

changed many cases of UC started appearing.

When the cause of UC/PSC is finally established, I will be astonished

if H. Pylori or one of its cousins isn't implicated in some capacity.

[Guest guest]

>

> As far as UC goes, I definitely think there is an environmental

factor. I grew up in a small town in MO. When the water source

changed many cases of UC started appearing.

When the cause of UC/PSC is finally established, I will be astonished

if H. Pylori or one of its cousins isn't implicated in some capacity.

[Guest guest]

> Also I do not think that it is confirmed that PSC

> is herditary. I worry about my children and grandchildren too.

>

reported in msg 100259:

One study suggests that there is a 100-fold increased risk of PSC in

first-degree relatives of PSC patients in comparison to the general

population:

Bergquist A, Lindberg G, Saarinen S, Broome U 2005 Increased

prevalence of primary sclerosing cholangitis among first-degree

relatives. J. Hepatol. 42: 252-256.

http://www.ncbi.nlm.nih.gov/pubmed/15664252

" First-degree relatives of patients with PSC have a PSC prevalence of

0.7%. "

Tim R

[Guest guest]

I don't have any family history of PSC or any related

liver problems. My grandmother on my dad's side,

however had colon problems and my sister's son has

Chron's Disease. I had UC and now a J pouch (which is

now 8 years old and still working just fine)

Cindy Baudoux-Northrup

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[Guest guest]

All of us who are parents have this concernregarding heredity. I've

felt like forcing my 40 year old son somehow to at least get a

colonoscopy.

An understanding of statistical methods would probably help us. When

studies that include statistics are cited, perhaps a brief explanation

could be given, in layman's term, if that is possible.

[Guest guest]

Arne,

I also have some form of genetic

correlation in my family. I have PSC, my sister has UC. We also share juvenile

epilepsy by the way.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of A & J M

Sent: Monday, April 14, 2008 21:04

To:

Subject: RE: Re: The

natural history of small-duct PSC

Like many autoimmune diseases, there is good evidence of a

genetic component. On the other hand, there also may need to be an

environmental trigger. I'm the only one of my family (3 brothers, a

sister, numerous nieces and nephews, parents, grandparents, uncles, aunts,

etc.) with ulcerative colitis or PSC. If I remember correctly,

Barby has experienced a much stronger correlation - cousin?

Arne

56 -

UC 1977, PSC 2000

Alive

and well in Minnesota

________________________________

From:

[mailto: ] On Behalf

Of zus888

....Also,

is this disease definitely hereditary? I read that in the

newspaper

article just posted and now I'm concerned for my kids.

Suzanna

[Guest guest]

Arne,

I also have some form of genetic

correlation in my family. I have PSC, my sister has UC. We also share juvenile

epilepsy by the way.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of A & J M

Sent: Monday, April 14, 2008 21:04

To:

Subject: RE: Re: The

natural history of small-duct PSC

Like many autoimmune diseases, there is good evidence of a

genetic component. On the other hand, there also may need to be an

environmental trigger. I'm the only one of my family (3 brothers, a

sister, numerous nieces and nephews, parents, grandparents, uncles, aunts,

etc.) with ulcerative colitis or PSC. If I remember correctly,

Barby has experienced a much stronger correlation - cousin?

Arne

56 -

UC 1977, PSC 2000

Alive

and well in Minnesota

________________________________

From:

[mailto: ] On Behalf

Of zus888

....Also,

is this disease definitely hereditary? I read that in the

newspaper

article just posted and now I'm concerned for my kids.

Suzanna

[Guest guest]

Arne,

I also have some form of genetic

correlation in my family. I have PSC, my sister has UC. We also share juvenile

epilepsy by the way.

Regards,

Chaim Boermeester, Israel

From:

[mailto: ] On Behalf Of A & J M

Sent: Monday, April 14, 2008 21:04

To:

Subject: RE: Re: The

natural history of small-duct PSC

Like many autoimmune diseases, there is good evidence of a

genetic component. On the other hand, there also may need to be an

environmental trigger. I'm the only one of my family (3 brothers, a

sister, numerous nieces and nephews, parents, grandparents, uncles, aunts,

etc.) with ulcerative colitis or PSC. If I remember correctly,

Barby has experienced a much stronger correlation - cousin?

Arne

56 -

UC 1977, PSC 2000

Alive

and well in Minnesota

________________________________

From:

[mailto: ] On Behalf

Of zus888

....Also,

is this disease definitely hereditary? I read that in the

newspaper

article just posted and now I'm concerned for my kids.

Suzanna

[Guest guest]

Tim -- thanks!

So we are talking about liver biopsy and triading and all that good stuff? I

need to

refamiliarize myself with the lingo -- I basically ignored my health issues for

the last five

years.

Colleen

> Small duct PSC does not involve strictures that can be seen via ERCP,

> either in or outside the liver. Microscopic changes are consistent

> with PSC and all other possible diagnoses must be ruled out to arrive

> at the small duct diagnosis.

>

> By the way, welcome back.

>

> Tim R, 3rd tx 7/7/07

>

[Guest guest]

Tim -- thanks!

So we are talking about liver biopsy and triading and all that good stuff? I

need to

refamiliarize myself with the lingo -- I basically ignored my health issues for

the last five

years.

Colleen

> Small duct PSC does not involve strictures that can be seen via ERCP,

> either in or outside the liver. Microscopic changes are consistent

> with PSC and all other possible diagnoses must be ruled out to arrive

> at the small duct diagnosis.

>

> By the way, welcome back.

>

> Tim R, 3rd tx 7/7/07

>

[Guest guest]

Tim -- thanks!

So we are talking about liver biopsy and triading and all that good stuff? I

need to

refamiliarize myself with the lingo -- I basically ignored my health issues for

the last five

years.

Colleen

> Small duct PSC does not involve strictures that can be seen via ERCP,

> either in or outside the liver. Microscopic changes are consistent

> with PSC and all other possible diagnoses must be ruled out to arrive

> at the small duct diagnosis.

>

> By the way, welcome back.

>

> Tim R, 3rd tx 7/7/07

>