Re: I'm Official - The diagnosis is in

[Guest guest]

Dear ;

Sorry to hear about your PSC diagnosis ... however I should imagine

that it won't really become " official " until the ERCP, which is

regarded as the " gold standard " for diagnosis. As regards the side-

effects of ursodiol, they seem to be rare, but you should keep an

eye open for those listed here:

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699047.html

http://www.medsafe.govt.nz/Profs/Datasheet/a/Actigallcap.htm

http://www.gicare.com/pated/ursodiol.htm

Some patients do have increased itching with ursodiol, and the

experience with primary biliary cirrhosis (PBC) patients is to start

at a low dose ursodiol (UDCA) dose and slowly work up, adding

rifampin if pruritus (itching) is a problem:

_____________________

Falk Symposium 142: GASTROENTEROLOGY WEEK FREIBURG 2004 (Part I)

AUTOIMMUNE LIVER DISEASE, Freiburg (Germany), October 12 - 13, 2004,

pp. 77-78 (2004)

Treatment of primary biliary cirrhosis and overlap syndromes:

current standards.

Poupon R

(a partial extract from this article)

First-line-medical treatment

To date, UDCA should be considered as the first-line treatment for

PBC. Daily doses ranging from 13 to 20 mg/kg/day as maintenance

therapy afford the optimal enrichment in biliary UDCA as well as the

most significant changes in liver biochemical tests. However,

because of the variable response to UDCA in terms of changes in the

enterohepatic circulation of endogenous bile acids as well as

induction of CYP3A, the time-honored " start low, go slow " approach

should be strictly adopted by monitoring the clinical and

biochemical response to slowly escalating UDCA doses. This approach

is crucial in patients having pruritus. To avoid prolonged time lag

in effective UDCA therapy, rifampin (300 to 600 mg/day) a potent

inducer of PXR, is recommended.

_____________________

I havn't seen this recommended for PSC. However, our son did develop

pruritus a few months after starting on ursodiol (~26 mg/kg/day),

and this was promptly controlled with 300 mg/day of rifampin.

Sorry I can't comment on prescriptions for antibiotics for

cholangitis attacks, since our son has not had any of these attacks.

Hopefully others will give their experience on this point.

I admire your positive attitude and strength!

I wish you all the best with the ERCP. Our son was given a short

course of antibiotics immediately after his ERCP at diagnosis, and

he had no infection following his ERCP.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

Dear ;

Sorry to hear about your PSC diagnosis ... however I should imagine

that it won't really become " official " until the ERCP, which is

regarded as the " gold standard " for diagnosis. As regards the side-

effects of ursodiol, they seem to be rare, but you should keep an

eye open for those listed here:

http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a699047.html

http://www.medsafe.govt.nz/Profs/Datasheet/a/Actigallcap.htm

http://www.gicare.com/pated/ursodiol.htm

Some patients do have increased itching with ursodiol, and the

experience with primary biliary cirrhosis (PBC) patients is to start

at a low dose ursodiol (UDCA) dose and slowly work up, adding

rifampin if pruritus (itching) is a problem:

_____________________

Falk Symposium 142: GASTROENTEROLOGY WEEK FREIBURG 2004 (Part I)

AUTOIMMUNE LIVER DISEASE, Freiburg (Germany), October 12 - 13, 2004,

pp. 77-78 (2004)

Treatment of primary biliary cirrhosis and overlap syndromes:

current standards.

Poupon R

(a partial extract from this article)

First-line-medical treatment

To date, UDCA should be considered as the first-line treatment for

PBC. Daily doses ranging from 13 to 20 mg/kg/day as maintenance

therapy afford the optimal enrichment in biliary UDCA as well as the

most significant changes in liver biochemical tests. However,

because of the variable response to UDCA in terms of changes in the

enterohepatic circulation of endogenous bile acids as well as

induction of CYP3A, the time-honored " start low, go slow " approach

should be strictly adopted by monitoring the clinical and

biochemical response to slowly escalating UDCA doses. This approach

is crucial in patients having pruritus. To avoid prolonged time lag

in effective UDCA therapy, rifampin (300 to 600 mg/day) a potent

inducer of PXR, is recommended.

_____________________

I havn't seen this recommended for PSC. However, our son did develop

pruritus a few months after starting on ursodiol (~26 mg/kg/day),

and this was promptly controlled with 300 mg/day of rifampin.

Sorry I can't comment on prescriptions for antibiotics for

cholangitis attacks, since our son has not had any of these attacks.

Hopefully others will give their experience on this point.

I admire your positive attitude and strength!

I wish you all the best with the ERCP. Our son was given a short

course of antibiotics immediately after his ERCP at diagnosis, and

he had no infection following his ERCP.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

-----Original

Message----- On Behalf Of jglr23

But I need someone to go to when the cholangitis attacks hit. Do you

folks get a repeat prescription for antibiotics, or do you have to see a doc or

go to the hospital everytime an attack occurs?

,

Not everyone gets

Cholangitis attacks. My son dx 6

years ago has never had one. Also,

some people (like a former group member) get the attacks really often…..for

a few months and then all of a sudden they completely stopped and haven’t

returned.

I’m really sorry

you got the dx.

Barb in Texas

[Guest guest]

-----Original

Message----- On Behalf Of jglr23

But I need someone to go to when the cholangitis attacks hit. Do you

folks get a repeat prescription for antibiotics, or do you have to see a doc or

go to the hospital everytime an attack occurs?

,

Not everyone gets

Cholangitis attacks. My son dx 6

years ago has never had one. Also,

some people (like a former group member) get the attacks really often…..for

a few months and then all of a sudden they completely stopped and haven’t

returned.

I’m really sorry

you got the dx.

Barb in Texas

[Guest guest]

-----Original

Message----- On Behalf Of jglr23

But I need someone to go to when the cholangitis attacks hit. Do you

folks get a repeat prescription for antibiotics, or do you have to see a doc or

go to the hospital everytime an attack occurs?

,

Not everyone gets

Cholangitis attacks. My son dx 6

years ago has never had one. Also,

some people (like a former group member) get the attacks really often…..for

a few months and then all of a sudden they completely stopped and haven’t

returned.

I’m really sorry

you got the dx.

Barb in Texas

[Guest guest]

Oh, I get cholangitis attacks. I had them pretty steadily for a year from 2003

- 2004.

They went on hiatus for two years until this winter when I was about five months

postpartum. Now I get them every month again. I usually recover within 8-12

hours, but this last one last week knocked me on my butt for three days.

I will be getting the ERCP sometime soon. I just have to call and schedule it.

The

pathologist at the liver disease center felt certain that by my biopsy he could

diagnose PSC. I asked about whether the ERCP was necessary to confirm it, and

my

doc said that he suspected it before the pathology report even came back, just

based

strictly on my symptoms and labs. I have been convinced that this would be the

diagnosis for a month now.

Now, I need to find a GI guy and get my colon taken care of, too. I do have a

question

about that. What is the definitive test for UC? And is colitis the same as UC,

or is

ulcerative a more specific kind of colitis?

Oh the research that lies ahead for me....

dx PSC and Colitis 2006

[Guest guest]

See http://www.ccfa.org/info/about/ucp for descriptions (they are also a wealth

of information about crohns and colitis). As far as definitive diagnosis,

colonoscopy, these days. It used to be barium enemas. I've had both, and much

prefer the colonoscopy (no radiation).

Arne

55 - UC 1977 - PSC 2000

Alive and (mostly) well in Minnesota

Now, I need to find a GI guy and get my colon taken care of, too. I do have a

question about that. What is the definitive test for UC? And is colitis the

same as UC, or is ulcerative a more specific kind of colitis?

[Guest guest]

See http://www.ccfa.org/info/about/ucp for descriptions (they are also a wealth

of information about crohns and colitis). As far as definitive diagnosis,

colonoscopy, these days. It used to be barium enemas. I've had both, and much

prefer the colonoscopy (no radiation).

Arne

55 - UC 1977 - PSC 2000

Alive and (mostly) well in Minnesota

Now, I need to find a GI guy and get my colon taken care of, too. I do have a

question about that. What is the definitive test for UC? And is colitis the

same as UC, or is ulcerative a more specific kind of colitis?

[Guest guest]

See http://www.ccfa.org/info/about/ucp for descriptions (they are also a wealth

of information about crohns and colitis). As far as definitive diagnosis,

colonoscopy, these days. It used to be barium enemas. I've had both, and much

prefer the colonoscopy (no radiation).

Arne

55 - UC 1977 - PSC 2000

Alive and (mostly) well in Minnesota

Now, I need to find a GI guy and get my colon taken care of, too. I do have a

question about that. What is the definitive test for UC? And is colitis the

same as UC, or is ulcerative a more specific kind of colitis?

[Guest guest]

Dear ,

I'm happy you now have an answer, but I'm sorry it wasn't a " rule out "

of the PSC! As for getting a GI - is there any reason that you cannot

work directly with the liver specialist who has diagnosed you? I

worked with a heptologist who also did GI cases. His office was pretty

busy, but it was always great to have someone who specialized in the

liver watching over me. I think many in this group go to heptologists,

if they're available.

Hang in there - I'm sure you'll be experiencing a wide range of

emotions in the next few days/weeks/months. We're here to listen!

Take care,

Deb in VA

PSC 1998, UC 1999, Listed Ltx 2001, LDLTX 5/19/2005, Partial Portal

Vein Thrombosis 7/20/2005, 14 PTCs with drain placements/ replacements

from 9/2005-3/2006, 3 sinus surgeries since 1/2006, and finally having

some " good " days!

[Guest guest]

I guess this geographical area is a bit weak in the GI/hepatology

department. I travel over an hour to see my liver specialist. I need

someone local for the cholangitis and the colitis. I called my friend

who did my liver biopsy and she recommended a group, but she wishes we

had more quality people here. I will call them soon.

[Guest guest]

I guess this geographical area is a bit weak in the GI/hepatology

department. I travel over an hour to see my liver specialist. I need

someone local for the cholangitis and the colitis. I called my friend

who did my liver biopsy and she recommended a group, but she wishes we

had more quality people here. I will call them soon.