RE: I need some advice please

[Guest guest]

,

There are more than a few people who

stopped Urso in the last few months because of recent research suggesting that

Urso does not help in the long run. I personally keep taking Urso, but I am

sure there will be plenty reactions of people that did stop Urso.

For what my opinion is worth, 3.2 for

bilirubin is in the jaundice stage and can definitely cause itching. I would

try to talk to the doctor again or get an appointment with him.

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of megasam2

Sent: Tuesday, February 03, 2009

08:46

To:

Subject: I need some

advice please

I asked about itching last week for my husband Rick.

His doctor was

back in the office today and had his nurse call to say that he thinks

it is an allergic reaction to something except that he hasn't changed

anything. His bilirubin is 3.2 but the other liver numbers are

normal. But ever since he started taking Urso his numbers have

always been normal, even during smaller cholangitis attacks. We both

know it isn't an allergic reaction to something, my husband has never

had any allergies. And the itching is all over his body and is

constant. His eyes have gotten more yellow and I can see a bit of a

yellow tinge to his skin now as well. Rick has an ERCP scheduled for

the 25th of this month, since the doc thinks its not PSC he said he

is in no hurry. Rick is thinking he doesn't want to take the Urso

anymore because he feels like it is just masking what is really going

on. Does anyone have any experience with stopping Urso and if it is

a good idea or a bad idea. Any advice on this situation is greatly

appreciated. We are both so confused and frustrated now.

wife to Rick

Crohn's, PSC, Spondyloarthropathy

www.jaimeandrick.blogspot.com

[Guest guest]

,

There are more than a few people who

stopped Urso in the last few months because of recent research suggesting that

Urso does not help in the long run. I personally keep taking Urso, but I am

sure there will be plenty reactions of people that did stop Urso.

For what my opinion is worth, 3.2 for

bilirubin is in the jaundice stage and can definitely cause itching. I would

try to talk to the doctor again or get an appointment with him.

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of megasam2

Sent: Tuesday, February 03, 2009

08:46

To:

Subject: I need some

advice please

I asked about itching last week for my husband Rick.

His doctor was

back in the office today and had his nurse call to say that he thinks

it is an allergic reaction to something except that he hasn't changed

anything. His bilirubin is 3.2 but the other liver numbers are

normal. But ever since he started taking Urso his numbers have

always been normal, even during smaller cholangitis attacks. We both

know it isn't an allergic reaction to something, my husband has never

had any allergies. And the itching is all over his body and is

constant. His eyes have gotten more yellow and I can see a bit of a

yellow tinge to his skin now as well. Rick has an ERCP scheduled for

the 25th of this month, since the doc thinks its not PSC he said he

is in no hurry. Rick is thinking he doesn't want to take the Urso

anymore because he feels like it is just masking what is really going

on. Does anyone have any experience with stopping Urso and if it is

a good idea or a bad idea. Any advice on this situation is greatly

appreciated. We are both so confused and frustrated now.

wife to Rick

Crohn's, PSC, Spondyloarthropathy

www.jaimeandrick.blogspot.com

[Guest guest]

Hi

My own experience with starting/stopping Urso happened when I began

taking it back in 2005. I started at the full dosage and developed

muscle pains in my legs within a day. Perhaps it was totally

coincidental and unrelated; however, I stopped taking it altogether.

Big mistake. I developed serious URQ pain which had me flat on my back

in agony. Not really knowing what this was all about (I was still

fairly new to the whole PSC and Urso thing--apparently it's not

recommended to quit Urso cold-turkey), I took some OTC meds to

alleviate what I thought were bad GI issues. Again, not a swift move

as I ended up having black tarry stools with my next BM. I called my

doc in a panic thinking the absolute worst. [Ok ... I didn't read the

product warnings or side effects ... .] Looking back, it almost

reads like the script for a stand-up comic's monologue.

Anyway, I resumed the Urso (slooooowwwwly) and that worked great. It

took 8 weeks to get me up to the full dosage what I'd previously done

in a day. My body adjusted to the increases just fine this time and my

LFTs came down over the next 6-12 months. My itching has,

unfortunately, increased lately but that could be from a variety of

reasons. [but I hope to find that out this week as I'm scheduled for a

CT scan on my liver this Friday to investigate possible nodules.]

[Guest guest]

Hi

My own experience with starting/stopping Urso happened when I began

taking it back in 2005. I started at the full dosage and developed

muscle pains in my legs within a day. Perhaps it was totally

coincidental and unrelated; however, I stopped taking it altogether.

Big mistake. I developed serious URQ pain which had me flat on my back

in agony. Not really knowing what this was all about (I was still

fairly new to the whole PSC and Urso thing--apparently it's not

recommended to quit Urso cold-turkey), I took some OTC meds to

alleviate what I thought were bad GI issues. Again, not a swift move

as I ended up having black tarry stools with my next BM. I called my

doc in a panic thinking the absolute worst. [Ok ... I didn't read the

product warnings or side effects ... .] Looking back, it almost

reads like the script for a stand-up comic's monologue.

Anyway, I resumed the Urso (slooooowwwwly) and that worked great. It

took 8 weeks to get me up to the full dosage what I'd previously done

in a day. My body adjusted to the increases just fine this time and my

LFTs came down over the next 6-12 months. My itching has,

unfortunately, increased lately but that could be from a variety of

reasons. [but I hope to find that out this week as I'm scheduled for a

CT scan on my liver this Friday to investigate possible nodules.]

[Guest guest]

I would look for a new doctor if he thinks

that PSC does not cause itching.

As far as Urso goes, I went off of it for

a short time in 2005. All of my liver numbers went up and I felt

horrible. I went to a new GI doctor who raised my previous dose and I

went back to being asymptomatic. I truly believe that I went 17 years

before transplant because I took Urso.

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of megasam2

Sent: Tuesday, February 03, 2009

12:46 AM

To:

Subject: I need some

advice please

I asked about itching last week for my husband Rick.

His doctor was

back in the office today and had his nurse call to say that he thinks

it is an allergic reaction to something except that he hasn't changed

anything. His bilirubin is 3.2 but the other liver numbers are

normal. But ever since he started taking Urso his numbers have

always been normal, even during smaller cholangitis attacks. We both

know it isn't an allergic reaction to something, my husband has never

had any allergies. And the itching is all over his body and is

constant. His eyes have gotten more yellow and I can see a bit of a

yellow tinge to his skin now as well. Rick has an ERCP scheduled for

the 25th of this month, since the doc thinks its not PSC he said he

is in no hurry. Rick is thinking he doesn't want to take the Urso

anymore because he feels like it is just masking what is really going

on. Does anyone have any experience with stopping Urso and if it is

a good idea or a bad idea. Any advice on this situation is greatly

appreciated. We are both so confused and frustrated now.

wife to Rick

Crohn's, PSC, Spondyloarthropathy

www.jaimeandrick.blogspot.com

[Guest guest]

I would look for a new doctor if he thinks

that PSC does not cause itching.

As far as Urso goes, I went off of it for

a short time in 2005. All of my liver numbers went up and I felt

horrible. I went to a new GI doctor who raised my previous dose and I

went back to being asymptomatic. I truly believe that I went 17 years

before transplant because I took Urso.

Joe

PSC & UC -

1990; Liver Transplant - 2007

From:

[mailto: ] On Behalf Of megasam2

Sent: Tuesday, February 03, 2009

12:46 AM

To:

Subject: I need some

advice please

I asked about itching last week for my husband Rick.

His doctor was

back in the office today and had his nurse call to say that he thinks

it is an allergic reaction to something except that he hasn't changed

anything. His bilirubin is 3.2 but the other liver numbers are

normal. But ever since he started taking Urso his numbers have

always been normal, even during smaller cholangitis attacks. We both

know it isn't an allergic reaction to something, my husband has never

had any allergies. And the itching is all over his body and is

constant. His eyes have gotten more yellow and I can see a bit of a

yellow tinge to his skin now as well. Rick has an ERCP scheduled for

the 25th of this month, since the doc thinks its not PSC he said he

is in no hurry. Rick is thinking he doesn't want to take the Urso

anymore because he feels like it is just masking what is really going

on. Does anyone have any experience with stopping Urso and if it is

a good idea or a bad idea. Any advice on this situation is greatly

appreciated. We are both so confused and frustrated now.

wife to Rick

Crohn's, PSC, Spondyloarthropathy

www.jaimeandrick.blogspot.com

[Guest guest]

I stopped Urso last October and things went south pretty quickly. My cipro was also reduced and the pouchitis became terrible. I was admitted to the hospital 3 times before it all got straightened out again.I think Urso does mask what is really going on, however, if you were diabetic, you could say the insulin was masking what was really going on - you probably wouldn't stop taking the insulin though. Urso doesn't slow the progress of the disease, but it seems to help the course of the disease.Marie

To: From: megasam2@...Date: Tue, 3 Feb 2009 06:45:45 +0000Subject: I need some advice please

I asked about itching last week for my husband Rick. His doctor was

back in the office today and had his nurse call to say that he thinks

it is an allergic reaction to something except that he hasn't changed

anything. His bilirubin is 3.2 but the other liver numbers are

normal. But ever since he started taking Urso his numbers have

always been normal, even during smaller cholangitis attacks. We both

know it isn't an allergic reaction to something, my husband has never

had any allergies. And the itching is all over his body and is

constant. His eyes have gotten more yellow and I can see a bit of a

yellow tinge to his skin now as well. Rick has an ERCP scheduled for

the 25th of this month, since the doc thinks its not PSC he said he

is in no hurry. Rick is thinking he doesn't want to take the Urso

anymore because he feels like it is just masking what is really going

on. Does anyone have any experience with stopping Urso and if it is

a good idea or a bad idea. Any advice on this situation is greatly

appreciated. We are both so confused and frustrated now.

wife to Rick

Crohn's, PSC, Spondyloarthropathy

www.jaimeandrick.blogspot.com

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