Re: PSC progression

[Guest guest]

Hi ,

I am new to the group, also. Welcome. I am so sorry to hear about your

husband's and your family's battle with UC and PSC.

My son was diagnosed with UC and PSC at age 14. During his teen years, the

PSC apparently went into remission. When he had his colon removed and a

J-pouch constructed in 1999, there was no sign of PSC. This year, in March

to be exact, the PSC returned in a severe way with jaundice, itching,

nausea, fatique, and sleeplessness mostly due to the severe itching. So Joe

had at least 10-15 years without PSC (I say that because we don't really

know when it actually became active again, that is until he became

symptomatic, because no doctor had checked for it for many, many years).

Was your husband's diagnosis of PSC based merely on the elevated liver

enzymes? Or were additional diagnostic tests performed?

Hang in there!

Chris

mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 2006

PSC progression

>I am new to the group. My husband was diagnosed with PSC nine years

> ago. He was having his colon removed due to UC when they found he had

> elavated liver enzymes. They then diagnosed him with PSC. About two

> months after surgery his liver enzymes returned to near normal. He has

> not taken any medication or treatments for PSC since then. He sees Dr

> Lindor at Mayo every year.

>

> I am wondering if he actually has PSC. At the time of the diagnosis we

> were told he would need a liver transplant eventually. We asked how

> long and the Dr. said seven years was the longest he had had anyone go.

>

> Is it possible to live with PSC and never have any complications? We

> feel like we have been living with a black cloud over our heads.

>

> We are also in the process of changing our health insurance due to my

> job change. We are in the process of applying for insurance but I know

> we are going to be rejected which means we will be purchasing state

> mandated insurance after we Cobra our current plan. If anyone can give

> me advice on this, I would really appreciate any advice I could get.

>

> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40

> so we have a lot to consider.

>

> Thanks for listening

>

> Becky

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I am new to the group, also. Welcome. I am so sorry to hear about your

husband's and your family's battle with UC and PSC.

My son was diagnosed with UC and PSC at age 14. During his teen years, the

PSC apparently went into remission. When he had his colon removed and a

J-pouch constructed in 1999, there was no sign of PSC. This year, in March

to be exact, the PSC returned in a severe way with jaundice, itching,

nausea, fatique, and sleeplessness mostly due to the severe itching. So Joe

had at least 10-15 years without PSC (I say that because we don't really

know when it actually became active again, that is until he became

symptomatic, because no doctor had checked for it for many, many years).

Was your husband's diagnosis of PSC based merely on the elevated liver

enzymes? Or were additional diagnostic tests performed?

Hang in there!

Chris

mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 2006

PSC progression

>I am new to the group. My husband was diagnosed with PSC nine years

> ago. He was having his colon removed due to UC when they found he had

> elavated liver enzymes. They then diagnosed him with PSC. About two

> months after surgery his liver enzymes returned to near normal. He has

> not taken any medication or treatments for PSC since then. He sees Dr

> Lindor at Mayo every year.

>

> I am wondering if he actually has PSC. At the time of the diagnosis we

> were told he would need a liver transplant eventually. We asked how

> long and the Dr. said seven years was the longest he had had anyone go.

>

> Is it possible to live with PSC and never have any complications? We

> feel like we have been living with a black cloud over our heads.

>

> We are also in the process of changing our health insurance due to my

> job change. We are in the process of applying for insurance but I know

> we are going to be rejected which means we will be purchasing state

> mandated insurance after we Cobra our current plan. If anyone can give

> me advice on this, I would really appreciate any advice I could get.

>

> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40

> so we have a lot to consider.

>

> Thanks for listening

>

> Becky

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

I am new to the group, also. Welcome. I am so sorry to hear about your

husband's and your family's battle with UC and PSC.

My son was diagnosed with UC and PSC at age 14. During his teen years, the

PSC apparently went into remission. When he had his colon removed and a

J-pouch constructed in 1999, there was no sign of PSC. This year, in March

to be exact, the PSC returned in a severe way with jaundice, itching,

nausea, fatique, and sleeplessness mostly due to the severe itching. So Joe

had at least 10-15 years without PSC (I say that because we don't really

know when it actually became active again, that is until he became

symptomatic, because no doctor had checked for it for many, many years).

Was your husband's diagnosis of PSC based merely on the elevated liver

enzymes? Or were additional diagnostic tests performed?

Hang in there!

Chris

mother of Joe (32), UC 1987, J-pouch 1999, PSC, acute pancreatitis 2006

PSC progression

>I am new to the group. My husband was diagnosed with PSC nine years

> ago. He was having his colon removed due to UC when they found he had

> elavated liver enzymes. They then diagnosed him with PSC. About two

> months after surgery his liver enzymes returned to near normal. He has

> not taken any medication or treatments for PSC since then. He sees Dr

> Lindor at Mayo every year.

>

> I am wondering if he actually has PSC. At the time of the diagnosis we

> were told he would need a liver transplant eventually. We asked how

> long and the Dr. said seven years was the longest he had had anyone go.

>

> Is it possible to live with PSC and never have any complications? We

> feel like we have been living with a black cloud over our heads.

>

> We are also in the process of changing our health insurance due to my

> job change. We are in the process of applying for insurance but I know

> we are going to be rejected which means we will be purchasing state

> mandated insurance after we Cobra our current plan. If anyone can give

> me advice on this, I would really appreciate any advice I could get.

>

> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40

> so we have a lot to consider.

>

> Thanks for listening

>

> Becky

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

He has had two liver biopsies and the scope (ERCP-I think that is what is called) Liver biopsies were normal, the scoped showed slight narrowing of bile ducts. He has a iliostomy because the pouch surgery was unsuccessful.

PSC progression>I am new to the group. My husband was diagnosed with PSC nine years> ago. He was having his colon removed due to UC when they found he had> elavated liver enzymes. They then diagnosed him with PSC. About two> months after surgery his liver enzymes returned to near normal. He has> not taken any medication or treatments for PSC since then. He sees Dr> Lindor at Mayo every year.>> I am wondering if he actually has PSC. At the time of the diagnosis we> were told he would need a liver transplant eventually. We asked how> long and the Dr. said seven years was the longest he had had anyone go.>> Is it possible to live with PSC and never have any complications? We> feel like we have been living with a black cloud over our heads.>> We are also in the process of changing our health insurance due to my> job change. We are in the process of applying for insurance but I know> we are going to be rejected which means we will be purchasing state> mandated insurance after we Cobra our current plan. If anyone can give> me advice on this, I would really appreciate any advice I could get.>> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40> so we have a lot to consider.>> Thanks for listening>> Becky>>>>>>>>>>>>>>>>>

[Guest guest]

He has had two liver biopsies and the scope (ERCP-I think that is what is called) Liver biopsies were normal, the scoped showed slight narrowing of bile ducts. He has a iliostomy because the pouch surgery was unsuccessful.

PSC progression>I am new to the group. My husband was diagnosed with PSC nine years> ago. He was having his colon removed due to UC when they found he had> elavated liver enzymes. They then diagnosed him with PSC. About two> months after surgery his liver enzymes returned to near normal. He has> not taken any medication or treatments for PSC since then. He sees Dr> Lindor at Mayo every year.>> I am wondering if he actually has PSC. At the time of the diagnosis we> were told he would need a liver transplant eventually. We asked how> long and the Dr. said seven years was the longest he had had anyone go.>> Is it possible to live with PSC and never have any complications? We> feel like we have been living with a black cloud over our heads.>> We are also in the process of changing our health insurance due to my> job change. We are in the process of applying for insurance but I know> we are going to be rejected which means we will be purchasing state> mandated insurance after we Cobra our current plan. If anyone can give> me advice on this, I would really appreciate any advice I could get.>> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40> so we have a lot to consider.>> Thanks for listening>> Becky>>>>>>>>>>>>>>>>>

[Guest guest]

He has had two liver biopsies and the scope (ERCP-I think that is what is called) Liver biopsies were normal, the scoped showed slight narrowing of bile ducts. He has a iliostomy because the pouch surgery was unsuccessful.

PSC progression>I am new to the group. My husband was diagnosed with PSC nine years> ago. He was having his colon removed due to UC when they found he had> elavated liver enzymes. They then diagnosed him with PSC. About two> months after surgery his liver enzymes returned to near normal. He has> not taken any medication or treatments for PSC since then. He sees Dr> Lindor at Mayo every year.>> I am wondering if he actually has PSC. At the time of the diagnosis we> were told he would need a liver transplant eventually. We asked how> long and the Dr. said seven years was the longest he had had anyone go.>> Is it possible to live with PSC and never have any complications? We> feel like we have been living with a black cloud over our heads.>> We are also in the process of changing our health insurance due to my> job change. We are in the process of applying for insurance but I know> we are going to be rejected which means we will be purchasing state> mandated insurance after we Cobra our current plan. If anyone can give> me advice on this, I would really appreciate any advice I could get.>> We have four children ages 7,8,9 and 10. I am 42 and my husband is 40> so we have a lot to consider.>> Thanks for listening>> Becky>>>>>>>>>>>>>>>>>

[Guest guest]

Becky,

Dr Lindor is one of the top PSC specialists in the world, so if he

is seeing your husband yearly then I presume he has appropriate

testing done to monitor his status. As testing for and diagnosis of

PSC becomes more common, more cases of mild, slowly progressing,

asymptomatic PSC appear. Your husband may be such a case. I would

ask Dr Lindor what his current estimate is of how your husband's PSC

will progress. Its obvious that the 7 year estimate made 9 years ago

was low.

Continued insurance coverage shouldn't be a problem as long as you

done let coverage lapse. Portability laws require that existing

conditions be covered when switching from one insurer to another.

Hope you can get some information that will drive the black cloud

away and let you enjoy the sunshine of your life. Remember most

people that post here are the ones having to deal with the problems

that can come with PSC. If there is nothing going on there is not

much incentive to remain actively involved. So I think if we were to

poll the membership we would not see many cases that never had

complications.

Regards,

Tim R

>

> I am new to the group. My husband was diagnosed with PSC nine

years

> ago. He was having his colon removed due to UC when they found he

had

> elavated liver enzymes. They then diagnosed him with PSC. About

two

> months after surgery his liver enzymes returned to near normal. He

has

> not taken any medication or treatments for PSC since then. He sees

Dr

> Lindor at Mayo every year.

>

> I am wondering if he actually has PSC. At the time of the

diagnosis we

> were told he would need a liver transplant eventually. We asked

how

> long and the Dr. said seven years was the longest he had had

anyone go.

>

> Is it possible to live with PSC and never have any complications?

We

> feel like we have been living with a black cloud over our heads.

>

> We are also in the process of changing our health insurance due to

my

> job change. We are in the process of applying for insurance but I

know

> we are going to be rejected which means we will be purchasing

state

> mandated insurance after we Cobra our current plan. If anyone can

give

> me advice on this, I would really appreciate any advice I could

get.

>

> We have four children ages 7,8,9 and 10. I am 42 and my husband

is 40

> so we have a lot to consider.

>

> Thanks for listening

>

> Becky

>

[Guest guest]

Becky,

Dr Lindor is one of the top PSC specialists in the world, so if he

is seeing your husband yearly then I presume he has appropriate

testing done to monitor his status. As testing for and diagnosis of

PSC becomes more common, more cases of mild, slowly progressing,

asymptomatic PSC appear. Your husband may be such a case. I would

ask Dr Lindor what his current estimate is of how your husband's PSC

will progress. Its obvious that the 7 year estimate made 9 years ago

was low.

Continued insurance coverage shouldn't be a problem as long as you

done let coverage lapse. Portability laws require that existing

conditions be covered when switching from one insurer to another.

Hope you can get some information that will drive the black cloud

away and let you enjoy the sunshine of your life. Remember most

people that post here are the ones having to deal with the problems

that can come with PSC. If there is nothing going on there is not

much incentive to remain actively involved. So I think if we were to

poll the membership we would not see many cases that never had

complications.

Regards,

Tim R

>

> I am new to the group. My husband was diagnosed with PSC nine

years

> ago. He was having his colon removed due to UC when they found he

had

> elavated liver enzymes. They then diagnosed him with PSC. About

two

> months after surgery his liver enzymes returned to near normal. He

has

> not taken any medication or treatments for PSC since then. He sees

Dr

> Lindor at Mayo every year.

>

> I am wondering if he actually has PSC. At the time of the

diagnosis we

> were told he would need a liver transplant eventually. We asked

how

> long and the Dr. said seven years was the longest he had had

anyone go.

>

> Is it possible to live with PSC and never have any complications?

We

> feel like we have been living with a black cloud over our heads.

>

> We are also in the process of changing our health insurance due to

my

> job change. We are in the process of applying for insurance but I

know

> we are going to be rejected which means we will be purchasing

state

> mandated insurance after we Cobra our current plan. If anyone can

give

> me advice on this, I would really appreciate any advice I could

get.

>

> We have four children ages 7,8,9 and 10. I am 42 and my husband

is 40

> so we have a lot to consider.

>

> Thanks for listening

>

> Becky

>

[Guest guest]

Becky,

Dr Lindor is one of the top PSC specialists in the world, so if he

is seeing your husband yearly then I presume he has appropriate

testing done to monitor his status. As testing for and diagnosis of

PSC becomes more common, more cases of mild, slowly progressing,

asymptomatic PSC appear. Your husband may be such a case. I would

ask Dr Lindor what his current estimate is of how your husband's PSC

will progress. Its obvious that the 7 year estimate made 9 years ago

was low.

Continued insurance coverage shouldn't be a problem as long as you

done let coverage lapse. Portability laws require that existing

conditions be covered when switching from one insurer to another.

Hope you can get some information that will drive the black cloud

away and let you enjoy the sunshine of your life. Remember most

people that post here are the ones having to deal with the problems

that can come with PSC. If there is nothing going on there is not

much incentive to remain actively involved. So I think if we were to

poll the membership we would not see many cases that never had

complications.

Regards,

Tim R

>

> I am new to the group. My husband was diagnosed with PSC nine

years

> ago. He was having his colon removed due to UC when they found he

had

> elavated liver enzymes. They then diagnosed him with PSC. About

two

> months after surgery his liver enzymes returned to near normal. He

has

> not taken any medication or treatments for PSC since then. He sees

Dr

> Lindor at Mayo every year.

>

> I am wondering if he actually has PSC. At the time of the

diagnosis we

> were told he would need a liver transplant eventually. We asked

how

> long and the Dr. said seven years was the longest he had had

anyone go.

>

> Is it possible to live with PSC and never have any complications?

We

> feel like we have been living with a black cloud over our heads.

>

> We are also in the process of changing our health insurance due to

my

> job change. We are in the process of applying for insurance but I

know

> we are going to be rejected which means we will be purchasing

state

> mandated insurance after we Cobra our current plan. If anyone can

give

> me advice on this, I would really appreciate any advice I could

get.

>

> We have four children ages 7,8,9 and 10. I am 42 and my husband

is 40

> so we have a lot to consider.

>

> Thanks for listening

>

> Becky

>

[Guest guest]

If your husband has had insurance, and the coverage

does NOT overlap-meaning he isn't without coverage at

any point, you will have a better chance of getting

insurance. That is what we were told by a couple

different independent ins. agents when we were trying

to get my brother health ins. Unfortunately that

didn't work for him.

Good luck!

Brother, 30, UC & PSC

-

[Guest guest]

If your husband has had insurance, and the coverage

does NOT overlap-meaning he isn't without coverage at

any point, you will have a better chance of getting

insurance. That is what we were told by a couple

different independent ins. agents when we were trying

to get my brother health ins. Unfortunately that

didn't work for him.

Good luck!

Brother, 30, UC & PSC

-

[Guest guest]

There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of rebeccasmith41

....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads...

Becky

[Guest guest]

We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year.

RE: PSC progression

There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001.

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of rebeccasmith41

....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads...

Becky

[Guest guest]

We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year.

RE: PSC progression

There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001.

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of rebeccasmith41

....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads...

Becky

[Guest guest]

We see Dr Lindor at Mayo every year. We live in Iowa, about four hours away from Rochester. My husband hates to go because he thinks it is a waste of time. I say you need to keep up and make sure their has been no progression. We are scheduled for July 10th this year.

RE: PSC progression

There is some evidence that there are a LOT more people with PSC than currently thought - just much more slower developing. I was diagnosed with PSC in 2000, and have been symptom-free since 2001.

Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of rebeccasmith41

....Is it possible to live with PSC and never have any complications? We feel like we have been living with a black cloud over our heads...

Becky

[Guest guest]

This is my first posting. I've been reading the messages for about

a week and it just blows my mind what people are going through and

what I will eventually have to face.

I was diagnosed with PSC in 2004 after gallbladder surgery and

ERCP. I was sent to Mayo for the transplant evaluation which turned

out to be premature. I haven't had any symptoms since, but they

told me 3-5 years before I would need to be put on " the list " .

I go to my MD for Ultrasound and blood test once a year, but I have

read that I should request to be tested every 3 months because

things can change that fast.

What's the general consensus on how often you should be tested?

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

This is my first posting. I've been reading the messages for about

a week and it just blows my mind what people are going through and

what I will eventually have to face.

I was diagnosed with PSC in 2004 after gallbladder surgery and

ERCP. I was sent to Mayo for the transplant evaluation which turned

out to be premature. I haven't had any symptoms since, but they

told me 3-5 years before I would need to be put on " the list " .

I go to my MD for Ultrasound and blood test once a year, but I have

read that I should request to be tested every 3 months because

things can change that fast.

What's the general consensus on how often you should be tested?

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

This is my first posting. I've been reading the messages for about

a week and it just blows my mind what people are going through and

what I will eventually have to face.

I was diagnosed with PSC in 2004 after gallbladder surgery and

ERCP. I was sent to Mayo for the transplant evaluation which turned

out to be premature. I haven't had any symptoms since, but they

told me 3-5 years before I would need to be put on " the list " .

I go to my MD for Ultrasound and blood test once a year, but I have

read that I should request to be tested every 3 months because

things can change that fast.

What's the general consensus on how often you should be tested?

>

> We see Dr Lindor at Mayo every year. We live in Iowa, about four

hours away from Rochester. My husband hates to go because he thinks

it is a waste of time. I say you need to keep up and make sure their

has been no progression. We are scheduled for July 10th this year.

>

>

> RE: PSC progression

>

>

>

> There is some evidence that there are a LOT more people with PSC

than currently thought - just much more slower developing. I was

diagnosed with PSC in 2000, and have been symptom-free since 2001.

>

>

>

> Arne

> 55 - UC 1977, PSC 2000

> Alive and (mostly) well in Minnesota

>

> ________________________________

>

> From: [mailto:psc-

support ] On Behalf Of rebeccasmith41

>

> ...Is it possible to live with PSC and never have any

complications? We feel like we have been living with a black cloud

over our heads...

>

> Becky

>

[Guest guest]

I will go out

on a limb here and post this message from one of the docs I have been

discussing my son’s care with and I asked him for general recommendations

on what the surveillance should be. Here were his recommendations including

IBD:

Surveillance for IBD involves yearly

colonoscopy with pan colonic biopsy starting after 7 years of documented

disease. This is best done by a pediatric gastroenterologist. Surveillance for PSC is

more controversial. I like to image the liver with U/S or CT every 2 years

early in the disease course and 1yr later in the disease course. I also like to

screen with tumor markers CEA and CA19-9 every 6 months later in the disease

course (5yrs). I do not screen with ERCP but use it to treat symptomatic

jaundice or cholestasis or to evaluate a rapid deterioration in liver function.

I also check LFT Alb PLT INR every 6 mos. An upper endoscopy every year is used to screen patients with

cirrhosis for the development of varicies. I also use ursodiol at 30mg/kg (high

dose). A MVI every day is also a good idea.

Now, don’t

freak with the talk of cirrhosis. My son has cirrhosis confirmed by liver

biopsy so this was part of my question about what surveillance he required.

I hope this

helps.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

I will go out

on a limb here and post this message from one of the docs I have been

discussing my son’s care with and I asked him for general recommendations

on what the surveillance should be. Here were his recommendations including

IBD:

Surveillance for IBD involves yearly

colonoscopy with pan colonic biopsy starting after 7 years of documented

disease. This is best done by a pediatric gastroenterologist. Surveillance for PSC is

more controversial. I like to image the liver with U/S or CT every 2 years

early in the disease course and 1yr later in the disease course. I also like to

screen with tumor markers CEA and CA19-9 every 6 months later in the disease

course (5yrs). I do not screen with ERCP but use it to treat symptomatic

jaundice or cholestasis or to evaluate a rapid deterioration in liver function.

I also check LFT Alb PLT INR every 6 mos. An upper endoscopy every year is used to screen patients with

cirrhosis for the development of varicies. I also use ursodiol at 30mg/kg (high

dose). A MVI every day is also a good idea.

Now, don’t

freak with the talk of cirrhosis. My son has cirrhosis confirmed by liver

biopsy so this was part of my question about what surveillance he required.

I hope this

helps.

Mom of Zoe (13) My very normal (teenager normal) soccer player;

Noah (8) Indeterminate colitis, PSC, Osteopenia (1-4 lumbar

vertebrae);

Aidan (4 1/2) Moderately-severe SNHL bilaterally

Recycle

Yourself

Become an

Organ Donor

[Guest guest]

-----Original

Message-----On Behalf Of psmorri61

it just blows my mind what people are going through and what I

will eventually have to face.

You can take comfort

in knowing that no two people with PSC go through exactly the same course of

symptoms. Many remain asymptomatic,

or with just a few symptoms, right up to transplant. A lot of people posting have problems or

questions, so it reads like everyone is sick, but we have far more group

members who just read & are doing very well, we just don’t hear from

them, because they are well. So it may

seem like you are in for a lot of trouble, when you very well, may not be. HTH.

I haven't had any symptoms since, but they told me 3-5 years before I would

need to be put on " the list " .

Many people go a very

long time before they are listed.

Because everyone’s disease progresses so differently, no one can give

you an exact time line.

I go to my MD for Ultrasound and blood test once a year, but I have read that I

should request to be tested every 3 months because things can change that fast.

Once a year is good,

if & that’s a big if, you have a problem or a new symptom that is

bothering you, you can always call for an earlier appointment. We had someone tell us that my son

should be tested every 3 months & we went along with it. That was a huge mistake, it was so unnecessary,

cost way too much $$, & wore his veins out. He was stage 4 cirrhosis when “someone”

told us to do this. (By the way,

that was 6 years ago!) This disease

does NOT change that fast, it progresses very slowly. Don’t worry, if you become sick,

you’ll be the first person to know it & you’ll have plenty of

time to take care of business. Sounds

like you have a good team of doctors in place, trust them. If your doctor was in error, the good folks

at Mayo, would have told him.

Welcome to the group,

Barb in Texas

[Guest guest]

> What are varicies and ascites? I've heard them mentioned, and know

> does not have them, but since they seem to be a possiblity for

> him at some point, I figured I should find out what they are.

>

Varicies are swollen veins (usually in the esophagus) that are cause

by portal hypertension. Portal hypertension can occur when cirrhosis

restricts the flow of blood through the liver, causing it to back up

and produce ballooning in the portal venous system. If the varicies

rupture the resulting blood loss can be fatal. Such a rupture is often

referred to as a " bleed " and may cause vomiting up large quanties of

blood. Varicies are monitored by an endoscopic examination of the

esophagus (basically the first part of an ERCP) and controlled by

banding, sclerotherapy or beta blockers to reduce portal pressure.

http://www.mayoclinic.com/health/esophageal-varices/AN00991

http://www.gastromd.com/education/esophagealvarices.html

http://www.emedicine.com/med/topic745.htm

Ascites is the accumulation of fluid within the abdominal cavity. This

causes the swollen belly appearance of patients with end stage liver

disease.

http://www.emedicine.com/med/topic173.htm

> Also, I'm a little confused in certain situations when they

> consinder " later in the disease course " . Do they mean from when

> when diagnosed or when disease may have actually began?

> already had many many strictures and cirrhosis by the time his PSC

> was discovered last fall.

Later in the disease course refers to the total time from inception to

complete liver failure. Typically early in the course of PSC there are

no external symptoms, only elevated liver enzymes. As PSC progresses,

strictures become evident in the bile ducts when viewed with ERCP or

MRCP. Fatigue, blockages, jaundice, itching and cholangitis may

appear, followed by other complication such as portal hypertension,

edema, ascities, hepatic encephalopathy, muscle weakness and wasting.

Histological examination (looking at tissue under the microscope) of

liver biopsy will show the liver progressing from Stage I, minor

damage with inflammatory cells surrounding bile ducts, to Stage II,

evidence of fibrosis, then Stage III with bridging fibrosis or

scarring, finally to Stage IV, cirrhosis. The histological stages may

or may not correspond well with the overt symptoms. All the factors

are taken into consideration when determining where in the course of

PSC you happen to be.

Tim R

[Guest guest]

It depends. When I was first diagnosed, I had LFTs done every 3 months, with US, colonoscopy and bone density once/year. With no symptoms since 2001, I now get LFTs every 6 months, no annual US or bone density test. Still get an annual colonoscopy, however.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of psmorri61

....I go to my MD for Ultrasound and blood test once a year, but I have

read that I should request to be tested every 3 months because

things can change that fast.

What's the general consensus on how often you should be tested?

[Guest guest]

It depends. When I was first diagnosed, I had LFTs done every 3 months, with US, colonoscopy and bone density once/year. With no symptoms since 2001, I now get LFTs every 6 months, no annual US or bone density test. Still get an annual colonoscopy, however.

Arne

55 - UC 1977, PSC 2000

Alive and (mostly) well in Minnesota

________________________________

From: [mailto: ] On Behalf Of psmorri61

....I go to my MD for Ultrasound and blood test once a year, but I have

read that I should request to be tested every 3 months because

things can change that fast.

What's the general consensus on how often you should be tested?

[Guest guest]

must be stage 4, then, as he has bridging fibrosis and cirrhosis. His one GI said he's probably had this for 10 years. I pointed out that 's only 8, to which he said "that tells you how bad it is, then". That being the case, I'm just being thankful he's not in liver failure at this point. AmiTim Romlein wrote: > What

are varicies and ascites? I've heard them mentioned, and know> does not have them, but since they seem to be a possiblity for> him at some point, I figured I should find out what they are.>Varicies are swollen veins (usually in the esophagus) that are causeby portal hypertension. Portal hypertension can occur when cirrhosisrestricts the flow of blood through the liver, causing it to back upand produce ballooning in the portal venous system. If the variciesrupture the resulting blood loss can be fatal. Such a rupture is oftenreferred to as a "bleed" and may cause vomiting up large quanties ofblood. Varicies are monitored by an endoscopic examination of theesophagus (basically the first part of an ERCP) and controlled bybanding, sclerotherapy or beta blockers to reduce portal pressure.http://www.mayoclinic.com/health/esophageal-varices/AN00991http://www.gastromd.com/education/esophagealvarices.htmlhttp://www.emedicine.com/med/topic745.htmAscites is the accumulation of fluid within the abdominal cavity. Thiscauses the swollen belly appearance of patients with end stage liverdisease. http://www.emedicine.com/med/topic173.htm> Also, I'm a little confused in certain situations when they> consinder "later in the disease course". Do they mean from when> when diagnosed or when disease may have actually began? > already had many many strictures and cirrhosis by the time his PSC> was

discovered last fall.Later in the disease course refers to the total time from inception tocomplete liver failure. Typically early in the course of PSC there areno external symptoms, only elevated liver enzymes. As PSC progresses,strictures become evident in the bile ducts when viewed with ERCP orMRCP. Fatigue, blockages, jaundice, itching and cholangitis mayappear, followed by other complication such as portal hypertension,edema, ascities, hepatic encephalopathy, muscle weakness and wasting.Histological examination (looking at tissue under the microscope) ofliver biopsy will show the liver progressing from Stage I, minordamage with inflammatory cells surrounding bile ducts, to Stage II,evidence of fibrosis, then Stage III with bridging fibrosis orscarring, finally to Stage IV, cirrhosis. The histological stages mayor may not correspond well with the overt symptoms. All the factorsare taken into consideration when

determining where in the course ofPSC you happen to be.Tim R

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