The Medical Management of Primary Sclerosing Cholangitis

[Guest guest]

The Medical Management of PSC http://www.medscape.com/viewarticle/569180_1

I wonder why there seems to be such a disparity

between doctors in the U.S. and Europe.

It’s been reported that doctors in Europe say patients can live with PSC, that it’s not necessarily a fatal disease and one

might never need a transplant. This

report from Medscape reports there is “no medical therapy capable of

halting disease progression in PSC.”

So the disease leads to “ultimately liver transplantation or death”. Any one

have any clues to why the doctors differ so much?

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]

-----Original

Message-----

I didn't want to be a debbie downer,

particularly since I think having hope can make such a difference in one's

ability to lead a happy life.

I hope I wasn’t being

a “Debbie downer” either.

I just wondered why the difference, could there be another strain? I don’t think the Medscape article

was making a reference to the difference between small duct and large duct, but

it might have been. On the other

hind why not just say that if it’s true? Or maybe I missed it.

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]

-----Original

Message-----

I didn't want to be a debbie downer,

particularly since I think having hope can make such a difference in one's

ability to lead a happy life.

I hope I wasn’t being

a “Debbie downer” either.

I just wondered why the difference, could there be another strain? I don’t think the Medscape article

was making a reference to the difference between small duct and large duct, but

it might have been. On the other

hind why not just say that if it’s true? Or maybe I missed it.

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]

--- Thank you so much for getting more info for the group !!Being new

to all this...how often should you see your GI guy?????

[Guest guest]

--- Thank you so much for getting more info for the group !!Being new

to all this...how often should you see your GI guy?????

[Guest guest]

>

> --- Thank you so much for getting more info for the group !!Being new

> to all this...how often should you see your GI guy?????

>

===========================

I agree with Arne -- it all depends!!! It depends on where you are in the

disease, on how

well or how lousy you feel (regardless of stage), and on how your individual dr.

likes to

monitor his/her patients. I see my dr. about every 6 weeks.

Since we have so many newbies, let me detail my situation a bit.

I've had Crohn's for 28 years, PSC for at least 17 years, and I'm fairly

advanced (cirrhosis,

portal hypertension, enlarged spleen, hepatic encephalopathy [HE], asterixis,

extreme

fatigue, etc.). Even though I am not suffering as so many are, I certainly

couldn't be

termed asymptomatic either. My white count, platelets, albumin, calcium, sodium

have all

been below normal levels for a long time and continue to creep slowly downward.

My

bilirubin is usually only very slightly elevated, and my ammonia stays high (how

high is

always considered irrevelant since it acts as a marker and is not directly

correlated to the

level of HE).

For the past several years my GI dr. has seen me every 6 weeks and has me go for

labwork

(CBC, CMP, PPT & INR, and ammonia levels) about a week prior to every

appointment.

Back in late 2004 or early 2005 (can't remember now!) we were told that my liver

probably

wouldn't last more than another year and a half to two years. Now, my hubby

loves to tell

folks that I'm a couple of years past my " use by " date! LOL!! He also joyfully

insists that

my life is a direct result of prayer and medication.

The Xifaxan which I take for the HE has been nothing short of a miracle. Not

only does it

allow me to think more clearly and actually function, but it kicked my Crohn's

into such

deep remission that I've been able to eat fruits & veggies again (after 26 years

of not

being able to touch them). My dr. also said today that he really wonders

whether the

Imuran isn't part of what has kept me going, even though it's not supposed to

have any

effect on PSC; I've been on the Imuran for 13 years now.

My schedule of seeing my dr. every 6 weeks is, I believe, rather unusual.

However, it has

worked extraordinarily well for us and it seems to be a real upper for our dr.

who keeps

shaking his head in amazement.

FYI, I'm one of the very rare people on this list NOT taking Urso. I couldn't

tolerate the

side-effects which were, for me, very intense. It doesn't seem to have mattered

though!

I'm in the even more rare category of persons NOT seeking a transplant. You

see, I cannot

tolerate anesthesia (due to a rare genetic defect called pseudocholinesterase

deficiency),

and 8-10 hours of surgery sans anesthesia just isn't my idea of a good time!!

So, having

come face to face with my mortality and engaging in a bit of a staredown with

death, I find

that life takes on a beauty and wonder which I could never have imagined. True,

I'm

unable to do a lot of things which I once dreamed of,however I've found that

life can be

incredibly blessed and wonderful even if all you can do is sit in a recliner

much of the day!

As Tim McGraw sings it:

" I loved deeper and I spoke sweeter

and I gave forgiveness I'd been denying

and he said someday I hope you get the chance

to live like you were dying. "

I don't post very often anymore (I'm too busy enjoying life!!!), but I do still

read all the

posts and keep this entire group in my prayers. Today is the first day of

another spring!

God bless each and every one of you.

Regards,

Carolyn B. in SC

[Guest guest]

>

> --- Thank you so much for getting more info for the group !!Being new

> to all this...how often should you see your GI guy?????

>

===========================

I agree with Arne -- it all depends!!! It depends on where you are in the

disease, on how

well or how lousy you feel (regardless of stage), and on how your individual dr.

likes to

monitor his/her patients. I see my dr. about every 6 weeks.

Since we have so many newbies, let me detail my situation a bit.

I've had Crohn's for 28 years, PSC for at least 17 years, and I'm fairly

advanced (cirrhosis,

portal hypertension, enlarged spleen, hepatic encephalopathy [HE], asterixis,

extreme

fatigue, etc.). Even though I am not suffering as so many are, I certainly

couldn't be

termed asymptomatic either. My white count, platelets, albumin, calcium, sodium

have all

been below normal levels for a long time and continue to creep slowly downward.

My

bilirubin is usually only very slightly elevated, and my ammonia stays high (how

high is

always considered irrevelant since it acts as a marker and is not directly

correlated to the

level of HE).

For the past several years my GI dr. has seen me every 6 weeks and has me go for

labwork

(CBC, CMP, PPT & INR, and ammonia levels) about a week prior to every

appointment.

Back in late 2004 or early 2005 (can't remember now!) we were told that my liver

probably

wouldn't last more than another year and a half to two years. Now, my hubby

loves to tell

folks that I'm a couple of years past my " use by " date! LOL!! He also joyfully

insists that

my life is a direct result of prayer and medication.

The Xifaxan which I take for the HE has been nothing short of a miracle. Not

only does it

allow me to think more clearly and actually function, but it kicked my Crohn's

into such

deep remission that I've been able to eat fruits & veggies again (after 26 years

of not

being able to touch them). My dr. also said today that he really wonders

whether the

Imuran isn't part of what has kept me going, even though it's not supposed to

have any

effect on PSC; I've been on the Imuran for 13 years now.

My schedule of seeing my dr. every 6 weeks is, I believe, rather unusual.

However, it has

worked extraordinarily well for us and it seems to be a real upper for our dr.

who keeps

shaking his head in amazement.

FYI, I'm one of the very rare people on this list NOT taking Urso. I couldn't

tolerate the

side-effects which were, for me, very intense. It doesn't seem to have mattered

though!

I'm in the even more rare category of persons NOT seeking a transplant. You

see, I cannot

tolerate anesthesia (due to a rare genetic defect called pseudocholinesterase

deficiency),

and 8-10 hours of surgery sans anesthesia just isn't my idea of a good time!!

So, having

come face to face with my mortality and engaging in a bit of a staredown with

death, I find

that life takes on a beauty and wonder which I could never have imagined. True,

I'm

unable to do a lot of things which I once dreamed of,however I've found that

life can be

incredibly blessed and wonderful even if all you can do is sit in a recliner

much of the day!

As Tim McGraw sings it:

" I loved deeper and I spoke sweeter

and I gave forgiveness I'd been denying

and he said someday I hope you get the chance

to live like you were dying. "

I don't post very often anymore (I'm too busy enjoying life!!!), but I do still

read all the

posts and keep this entire group in my prayers. Today is the first day of

another spring!

God bless each and every one of you.

Regards,

Carolyn B. in SC

[Guest guest]

Hi Carolyn,

That’s the spirit!

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Carolyn B.

Sent: Thursday, March 20, 2008 07:51

To:

Subject: Re: The

Medical Management of Primary Sclerosing Cholangitis

>

> --- Thank you so much for getting more info for the group !!Being new

> to all this...how often should you see your GI guy?????

>

===========================

I agree with Arne -- it all depends!!! It depends on where you are in the

disease, on how

well or how lousy you feel (regardless of stage), and on how your individual

dr. likes to

monitor his/her patients. I see my dr. about every 6 weeks.

Since we have so many newbies, let me detail my situation a bit.

I've had Crohn's for 28 years, PSC for at least 17 years, and I'm fairly

advanced (cirrhosis,

portal hypertension, enlarged spleen, hepatic encephalopathy [HE], asterixis,

extreme

fatigue, etc.). Even though I am not suffering as so many are, I certainly

couldn't be

termed asymptomatic either. My white count, platelets, albumin, calcium, sodium

have all

been below normal levels for a long time and continue to creep slowly downward.

My

bilirubin is usually only very slightly elevated, and my ammonia stays high

(how high is

always considered irrevelant since it acts as a marker and is not directly

correlated to the

level of HE).

For the past several years my GI dr. has seen me every 6 weeks and has me go

for labwork

(CBC, CMP, PPT & INR, and ammonia levels) about a week prior to every

appointment.

Back in late 2004 or early 2005 (can't remember now!) we were told that my

liver probably

wouldn't last more than another year and a half to two years. Now, my hubby

loves to tell

folks that I'm a couple of years past my " use by " date! LOL!! He also

joyfully insists that

my life is a direct result of prayer and medication.

The Xifaxan which I take for the HE has been nothing short of a miracle. Not

only does it

allow me to think more clearly and actually function, but it kicked my Crohn's

into such

deep remission that I've been able to eat fruits & veggies again (after 26

years of not

being able to touch them). My dr. also said today that he really wonders

whether the

Imuran isn't part of what has kept me going, even though it's not supposed to

have any

effect on PSC; I've been on the Imuran for 13 years now.

My schedule of seeing my dr. every 6 weeks is, I believe, rather unusual.

However, it has

worked extraordinarily well for us and it seems to be a real upper for our dr.

who keeps

shaking his head in amazement.

FYI, I'm one of the very rare people on this list NOT taking Urso. I couldn't

tolerate the

side-effects which were, for me, very intense. It doesn't seem to have mattered

though!

I'm in the even more rare category of persons NOT seeking a transplant. You

see, I cannot

tolerate anesthesia (due to a rare genetic defect called pseudocholinesterase

deficiency),

and 8-10 hours of surgery sans anesthesia just isn't my idea of a good time!!

So, having

come face to face with my mortality and engaging in a bit of a staredown with

death, I find

that life takes on a beauty and wonder which I could never have imagined. True,

I'm

unable to do a lot of things which I once dreamed of,however I've found that

life can be

incredibly blessed and wonderful even if all you can do is sit in a recliner

much of the day!

As Tim McGraw sings it:

" I loved deeper and I spoke sweeter

and I gave forgiveness I'd been denying

and he said someday I hope you get the chance

to live like you were dying. "

I don't post very often anymore (I'm too busy enjoying life!!!), but I do still

read all the

posts and keep this entire group in my prayers. Today is the first day of

another spring!

God bless each and every one of you.

Regards,

Carolyn B. in SC

[Guest guest]

Hi Carolyn,

That’s the spirit!

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Carolyn B.

Sent: Thursday, March 20, 2008 07:51

To:

Subject: Re: The

Medical Management of Primary Sclerosing Cholangitis

>

> --- Thank you so much for getting more info for the group !!Being new

> to all this...how often should you see your GI guy?????

>

===========================

I agree with Arne -- it all depends!!! It depends on where you are in the

disease, on how

well or how lousy you feel (regardless of stage), and on how your individual

dr. likes to

monitor his/her patients. I see my dr. about every 6 weeks.

Since we have so many newbies, let me detail my situation a bit.

I've had Crohn's for 28 years, PSC for at least 17 years, and I'm fairly

advanced (cirrhosis,

portal hypertension, enlarged spleen, hepatic encephalopathy [HE], asterixis,

extreme

fatigue, etc.). Even though I am not suffering as so many are, I certainly

couldn't be

termed asymptomatic either. My white count, platelets, albumin, calcium, sodium

have all

been below normal levels for a long time and continue to creep slowly downward.

My

bilirubin is usually only very slightly elevated, and my ammonia stays high

(how high is

always considered irrevelant since it acts as a marker and is not directly

correlated to the

level of HE).

For the past several years my GI dr. has seen me every 6 weeks and has me go

for labwork

(CBC, CMP, PPT & INR, and ammonia levels) about a week prior to every

appointment.

Back in late 2004 or early 2005 (can't remember now!) we were told that my

liver probably

wouldn't last more than another year and a half to two years. Now, my hubby

loves to tell

folks that I'm a couple of years past my " use by " date! LOL!! He also

joyfully insists that

my life is a direct result of prayer and medication.

The Xifaxan which I take for the HE has been nothing short of a miracle. Not

only does it

allow me to think more clearly and actually function, but it kicked my Crohn's

into such

deep remission that I've been able to eat fruits & veggies again (after 26

years of not

being able to touch them). My dr. also said today that he really wonders

whether the

Imuran isn't part of what has kept me going, even though it's not supposed to

have any

effect on PSC; I've been on the Imuran for 13 years now.

My schedule of seeing my dr. every 6 weeks is, I believe, rather unusual.

However, it has

worked extraordinarily well for us and it seems to be a real upper for our dr.

who keeps

shaking his head in amazement.

FYI, I'm one of the very rare people on this list NOT taking Urso. I couldn't

tolerate the

side-effects which were, for me, very intense. It doesn't seem to have mattered

though!

I'm in the even more rare category of persons NOT seeking a transplant. You

see, I cannot

tolerate anesthesia (due to a rare genetic defect called pseudocholinesterase

deficiency),

and 8-10 hours of surgery sans anesthesia just isn't my idea of a good time!!

So, having

come face to face with my mortality and engaging in a bit of a staredown with

death, I find

that life takes on a beauty and wonder which I could never have imagined. True,

I'm

unable to do a lot of things which I once dreamed of,however I've found that

life can be

incredibly blessed and wonderful even if all you can do is sit in a recliner

much of the day!

As Tim McGraw sings it:

" I loved deeper and I spoke sweeter

and I gave forgiveness I'd been denying

and he said someday I hope you get the chance

to live like you were dying. "

I don't post very often anymore (I'm too busy enjoying life!!!), but I do still

read all the

posts and keep this entire group in my prayers. Today is the first day of

another spring!

God bless each and every one of you.

Regards,

Carolyn B. in SC

[Guest guest]

EEECH -

I am so sorry to all! I forgot to delete from the original message. I apologize!

Joanne H

... I was so inspired by your hope and your enjoyment of life. Your email is a wonderful description of "Living Life to the Fullest". I will re-read the song quotation many times in the future.

Joanne H

(, Ca)

..