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Hi,

my son 16, is taking ursodeoxycholic acid (same as Ursodiol I

believe). He takes 750mg in the morning and 500mg at night. Is you

Daughters dose 300mg total for the day? or 900mg morning and 900mg

at night?

Our Doc told us that our sons dose is a moderate to high dose. Also

Tim was diagnosed on the basis of high LFT's, liver biopsy and

Magnetic resonance cholangiopancreatography, not ERCP.

Hope this helps,

Penny

Mum of Tim 16, UC 04, PSC 2/05

> My daughter also is on Ursodiol 300mg - 2 capsules 3x a day. I am

> trying to find out if this is a high dose, low dose or average. I

also

> explained to the doctor that that middle dose in the middle of the

day

> would be hard to get into her as she might forget and was told

that

> breaking up to dose into 3 in the morn. and 3 at night would be

ok. Are

> others on a similar schedules? Thanks for your help.

>

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Dear " tmcos4 " ;

ERCP is considered the most definitive for PSC diagnosis, but no

doubt experienced pathologists can recognize PSC from biopsy alone.

The following text is from this article:

________________________

Chronic Cholestatic Liver Disease in Adults

by Ortiz Zein, MD and D Lindor, MD, Best Practice of

Medicine. January 2000.

from the section on " Primary Sclerosing Cholangitis " ....

Diagnostic Studies > Laboratory tests

The most common abnormality is elevation of serum alkaline

phosphatase in association with mild elevation of transaminases.

Serum bilirubin levels are only mildly elevated early on, but

increase with disease progression or with occurrence of

complications.

Diagnostic Studies > Radiologic studies

Cholangiography is the most important diagnostic study for PSC.

Endoscopic retrograde cholangiopancreatography (ERCP) is preferred,

but percutaneous transhepatic cholangiography is indicated when some

portions of the intrahepatic biliary tree cannot be visualized on

endoscopic retrograde cholangiopancreatography (ERCP). Typical

findings of PSC on ERCP include multifocal strictures of the

intrahepatic and extrahepatic biliary tree. The intervening segments

of normal to dilated bile ducts give the classic " beaded "

appearance.

Magnetic resonance cholangiography permits good visualization of the

biliary tree without the need for an invasive procedure [48] but

does not allow for biopsy, brushing, or stricture dilatation.

Diagnostic Studies > Histopathology

A liver biopsy is indicated in patients with suspected PSC to

establish the diagnosis and to stage the disease. Typical findings

include absence of intralobular bile ducts in some portal tracts

(ductopenia), duct proliferation, and periductal fibrosis with the

occasional but almost pathognomonic onion-skin pattern with duct

obliteration [21]. Accurate staging on the basis of a needle biopsy

is difficult because changes vary in severity in different parts of

the organ. There are four stages: the portal stage, the periportal

stage, the septal stage, and the cirrhotic stage, which is

characterized by the development of regenerative nodules [13].

Differential Diagnosis

The differential diagnosis of PSC includes causes of chronic

cholestasis such as PBC, drug-induced cholestasis, idiopathic

adulthood ductopenia, cholestatic alcoholic liver disease, and

others. Diseases with a similar cholangiographic appearance include

AIDS-associated cholangiopathy, cholangiopathy after hepatic artery

manipulation or chemotherapy, and extrahepatic duct obstruction

caused by stones, strictures, or tumors. Table 4 shows a comparison

between some characteristics of PBC and PSC.

________________________

for the full text of the above article, go to:

http://www.psc-literature.org/wwwres.htm

then scroll down to " P " and click on the link:

Primary Sclerosing Cholangitis (Best Practice of Medicine:

Hepatology: Chronic Cholestatic Liver Disease in Adults

(MerckMedicus))

Our son first had a biospy, and this did not show anything

conclusive, so they did an ERCP to obtain the diagnosis. MRCP is not

invasive and might be a good alternative if confirmation of

diagnosis (based on labs and biopsy) is all that is required. ERCP

allows for interventions (like opening bile duct strictures), but

can sometimes result in complications such as pancreatitis.

Please visit our " Medication Dose Calculator " to calculate ursodiol

dose based on weight:

http://www.psc-literature.org/dosecalc.htm

Suppose that your daughter's weight is 140 lb, and her total daily

amount of ursodiol taken is 1800 mg per day, then her dose in

mg/kg/d would be 28.35, which would represent a high dose [typically

25- 30 mg/kg/d]. Basically, you have to first convert weight in lb

to kg, by dividing by 2.205. Weight in kg is then divided into the

daily mg dose of medication to give the dose calculated as mg/kg/d.

It's O.K. to split the dose into morning and night ... this is

exactly what our son does.

Best regards,

Dave

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

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Guest guest

Dear " tmcos4 " ;

ERCP is considered the most definitive for PSC diagnosis, but no

doubt experienced pathologists can recognize PSC from biopsy alone.

The following text is from this article:

________________________

Chronic Cholestatic Liver Disease in Adults

by Ortiz Zein, MD and D Lindor, MD, Best Practice of

Medicine. January 2000.

from the section on " Primary Sclerosing Cholangitis " ....

Diagnostic Studies > Laboratory tests

The most common abnormality is elevation of serum alkaline

phosphatase in association with mild elevation of transaminases.

Serum bilirubin levels are only mildly elevated early on, but

increase with disease progression or with occurrence of

complications.

Diagnostic Studies > Radiologic studies

Cholangiography is the most important diagnostic study for PSC.

Endoscopic retrograde cholangiopancreatography (ERCP) is preferred,

but percutaneous transhepatic cholangiography is indicated when some

portions of the intrahepatic biliary tree cannot be visualized on

endoscopic retrograde cholangiopancreatography (ERCP). Typical

findings of PSC on ERCP include multifocal strictures of the

intrahepatic and extrahepatic biliary tree. The intervening segments

of normal to dilated bile ducts give the classic " beaded "

appearance.

Magnetic resonance cholangiography permits good visualization of the

biliary tree without the need for an invasive procedure [48] but

does not allow for biopsy, brushing, or stricture dilatation.

Diagnostic Studies > Histopathology

A liver biopsy is indicated in patients with suspected PSC to

establish the diagnosis and to stage the disease. Typical findings

include absence of intralobular bile ducts in some portal tracts

(ductopenia), duct proliferation, and periductal fibrosis with the

occasional but almost pathognomonic onion-skin pattern with duct

obliteration [21]. Accurate staging on the basis of a needle biopsy

is difficult because changes vary in severity in different parts of

the organ. There are four stages: the portal stage, the periportal

stage, the septal stage, and the cirrhotic stage, which is

characterized by the development of regenerative nodules [13].

Differential Diagnosis

The differential diagnosis of PSC includes causes of chronic

cholestasis such as PBC, drug-induced cholestasis, idiopathic

adulthood ductopenia, cholestatic alcoholic liver disease, and

others. Diseases with a similar cholangiographic appearance include

AIDS-associated cholangiopathy, cholangiopathy after hepatic artery

manipulation or chemotherapy, and extrahepatic duct obstruction

caused by stones, strictures, or tumors. Table 4 shows a comparison

between some characteristics of PBC and PSC.

________________________

for the full text of the above article, go to:

http://www.psc-literature.org/wwwres.htm

then scroll down to " P " and click on the link:

Primary Sclerosing Cholangitis (Best Practice of Medicine:

Hepatology: Chronic Cholestatic Liver Disease in Adults

(MerckMedicus))

Our son first had a biospy, and this did not show anything

conclusive, so they did an ERCP to obtain the diagnosis. MRCP is not

invasive and might be a good alternative if confirmation of

diagnosis (based on labs and biopsy) is all that is required. ERCP

allows for interventions (like opening bile duct strictures), but

can sometimes result in complications such as pancreatitis.

Please visit our " Medication Dose Calculator " to calculate ursodiol

dose based on weight:

http://www.psc-literature.org/dosecalc.htm

Suppose that your daughter's weight is 140 lb, and her total daily

amount of ursodiol taken is 1800 mg per day, then her dose in

mg/kg/d would be 28.35, which would represent a high dose [typically

25- 30 mg/kg/d]. Basically, you have to first convert weight in lb

to kg, by dividing by 2.205. Weight in kg is then divided into the

daily mg dose of medication to give the dose calculated as mg/kg/d.

It's O.K. to split the dose into morning and night ... this is

exactly what our son does.

Best regards,

Dave

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

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Dear Penny, Thanks for the info about your son, how he was diagnosed and his meds. My daughter is taking 1800mg/day. Has your son had any side effects from the ursodeoxycholic acid? nnyd22 wrote: Hi,my son 16, is taking ursodeoxycholic acid (same as Ursodiol I believe). He takes 750mg in the morning and 500mg at night. Is you Daughters dose 300mg total for the day? or 900mg morning and 900mg at night?Our Doc told us that our sons dose is a moderate to

high dose. Also Tim was diagnosed on the basis of high LFT's, liver biopsy and Magnetic resonance cholangiopancreatography, not ERCP.Hope this helps,PennyMum of Tim 16, UC 04, PSC 2/05> My daughter also is on Ursodiol 300mg - 2 capsules 3x a day. I am > trying to find out if this is a high dose, low dose or average. I also > explained to the doctor that that middle dose in the middle of the day > would be hard to get into her as she might forget and was told that > breaking up to dose into 3 in the morn. and 3 at night would be ok. Are > others on a similar schedules? Thanks for your help.> __________________________________________________

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Guest guest

Dear Penny, Thanks for the info about your son, how he was diagnosed and his meds. My daughter is taking 1800mg/day. Has your son had any side effects from the ursodeoxycholic acid? nnyd22 wrote: Hi,my son 16, is taking ursodeoxycholic acid (same as Ursodiol I believe). He takes 750mg in the morning and 500mg at night. Is you Daughters dose 300mg total for the day? or 900mg morning and 900mg at night?Our Doc told us that our sons dose is a moderate to

high dose. Also Tim was diagnosed on the basis of high LFT's, liver biopsy and Magnetic resonance cholangiopancreatography, not ERCP.Hope this helps,PennyMum of Tim 16, UC 04, PSC 2/05> My daughter also is on Ursodiol 300mg - 2 capsules 3x a day. I am > trying to find out if this is a high dose, low dose or average. I also > explained to the doctor that that middle dose in the middle of the day > would be hard to get into her as she might forget and was told that > breaking up to dose into 3 in the morn. and 3 at night would be ok. Are > others on a similar schedules? Thanks for your help.> __________________________________________________

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Thanks for the websites and your knowledge on this disease. I am so new to this and everyday I am learning more. As far as the dosage amount for the URSO, I thought is was kind of funny how you hit my daughters weight exactaly for the calculations.........she is 5'8 and weighs 140lbs. Thanks again. wrote: Dear "tmcos4";ERCP is considered the most definitive for PSC diagnosis, but no doubt experienced pathologists can recognize PSC from biopsy alone. The

following text is from this article:________________________Chronic Cholestatic Liver Disease in Adults by Ortiz Zein, MD and D Lindor, MD, Best Practice of Medicine. January 2000. from the section on "Primary Sclerosing Cholangitis" ....Diagnostic Studies > Laboratory tests The most common abnormality is elevation of serum alkaline phosphatase in association with mild elevation of transaminases. Serum bilirubin levels are only mildly elevated early on, but increase with disease progression or with occurrence of complications.Diagnostic Studies > Radiologic studies Cholangiography is the most important diagnostic study for PSC. Endoscopic retrograde cholangiopancreatography (ERCP) is preferred, but percutaneous transhepatic cholangiography is indicated when some portions of the intrahepatic biliary tree cannot be visualized on endoscopic

retrograde cholangiopancreatography (ERCP). Typical findings of PSC on ERCP include multifocal strictures of the intrahepatic and extrahepatic biliary tree. The intervening segments of normal to dilated bile ducts give the classic "beaded" appearance. Magnetic resonance cholangiography permits good visualization of the biliary tree without the need for an invasive procedure [48] but does not allow for biopsy, brushing, or stricture dilatation.Diagnostic Studies > Histopathology A liver biopsy is indicated in patients with suspected PSC to establish the diagnosis and to stage the disease. Typical findings include absence of intralobular bile ducts in some portal tracts (ductopenia), duct proliferation, and periductal fibrosis with the occasional but almost pathognomonic onion-skin pattern with duct obliteration [21]. Accurate staging on the basis of a needle biopsy is difficult because

changes vary in severity in different parts of the organ. There are four stages: the portal stage, the periportal stage, the septal stage, and the cirrhotic stage, which is characterized by the development of regenerative nodules [13].Differential Diagnosis The differential diagnosis of PSC includes causes of chronic cholestasis such as PBC, drug-induced cholestasis, idiopathic adulthood ductopenia, cholestatic alcoholic liver disease, and others. Diseases with a similar cholangiographic appearance include AIDS-associated cholangiopathy, cholangiopathy after hepatic artery manipulation or chemotherapy, and extrahepatic duct obstruction caused by stones, strictures, or tumors. Table 4 shows a comparison between some characteristics of PBC and PSC.________________________for the full text of the above article, go to:http://www.psc-literature.org/wwwres.htmthen scroll down to "P" and click on the link:Primary Sclerosing Cholangitis (Best Practice of Medicine: Hepatology: Chronic Cholestatic Liver Disease in Adults (MerckMedicus)) Our son first had a biospy, and this did not show anything conclusive, so they did an ERCP to obtain the diagnosis. MRCP is not invasive and might be a good alternative if confirmation of diagnosis (based on labs and biopsy) is all that is required. ERCP allows for interventions (like opening bile duct strictures), but can sometimes result in complications such as pancreatitis.Please visit our "Medication Dose Calculator" to calculate ursodiol dose based on weight:http://www.psc-literature.org/dosecalc.htmSuppose that your daughter's weight

is 140 lb, and her total daily amount of ursodiol taken is 1800 mg per day, then her dose in mg/kg/d would be 28.35, which would represent a high dose [typically 25- 30 mg/kg/d]. Basically, you have to first convert weight in lb to kg, by dividing by 2.205. Weight in kg is then divided into the daily mg dose of medication to give the dose calculated as mg/kg/d. It's O.K. to split the dose into morning and night ... this is exactly what our son does.Best regards,Dave (father of (21); PSC 07/03; UC 08/03) __________________________________________________

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Thanks for the websites and your knowledge on this disease. I am so new to this and everyday I am learning more. As far as the dosage amount for the URSO, I thought is was kind of funny how you hit my daughters weight exactaly for the calculations.........she is 5'8 and weighs 140lbs. Thanks again. wrote: Dear "tmcos4";ERCP is considered the most definitive for PSC diagnosis, but no doubt experienced pathologists can recognize PSC from biopsy alone. The

following text is from this article:________________________Chronic Cholestatic Liver Disease in Adults by Ortiz Zein, MD and D Lindor, MD, Best Practice of Medicine. January 2000. from the section on "Primary Sclerosing Cholangitis" ....Diagnostic Studies > Laboratory tests The most common abnormality is elevation of serum alkaline phosphatase in association with mild elevation of transaminases. Serum bilirubin levels are only mildly elevated early on, but increase with disease progression or with occurrence of complications.Diagnostic Studies > Radiologic studies Cholangiography is the most important diagnostic study for PSC. Endoscopic retrograde cholangiopancreatography (ERCP) is preferred, but percutaneous transhepatic cholangiography is indicated when some portions of the intrahepatic biliary tree cannot be visualized on endoscopic

retrograde cholangiopancreatography (ERCP). Typical findings of PSC on ERCP include multifocal strictures of the intrahepatic and extrahepatic biliary tree. The intervening segments of normal to dilated bile ducts give the classic "beaded" appearance. Magnetic resonance cholangiography permits good visualization of the biliary tree without the need for an invasive procedure [48] but does not allow for biopsy, brushing, or stricture dilatation.Diagnostic Studies > Histopathology A liver biopsy is indicated in patients with suspected PSC to establish the diagnosis and to stage the disease. Typical findings include absence of intralobular bile ducts in some portal tracts (ductopenia), duct proliferation, and periductal fibrosis with the occasional but almost pathognomonic onion-skin pattern with duct obliteration [21]. Accurate staging on the basis of a needle biopsy is difficult because

changes vary in severity in different parts of the organ. There are four stages: the portal stage, the periportal stage, the septal stage, and the cirrhotic stage, which is characterized by the development of regenerative nodules [13].Differential Diagnosis The differential diagnosis of PSC includes causes of chronic cholestasis such as PBC, drug-induced cholestasis, idiopathic adulthood ductopenia, cholestatic alcoholic liver disease, and others. Diseases with a similar cholangiographic appearance include AIDS-associated cholangiopathy, cholangiopathy after hepatic artery manipulation or chemotherapy, and extrahepatic duct obstruction caused by stones, strictures, or tumors. Table 4 shows a comparison between some characteristics of PBC and PSC.________________________for the full text of the above article, go to:http://www.psc-literature.org/wwwres.htmthen scroll down to "P" and click on the link:Primary Sclerosing Cholangitis (Best Practice of Medicine: Hepatology: Chronic Cholestatic Liver Disease in Adults (MerckMedicus)) Our son first had a biospy, and this did not show anything conclusive, so they did an ERCP to obtain the diagnosis. MRCP is not invasive and might be a good alternative if confirmation of diagnosis (based on labs and biopsy) is all that is required. ERCP allows for interventions (like opening bile duct strictures), but can sometimes result in complications such as pancreatitis.Please visit our "Medication Dose Calculator" to calculate ursodiol dose based on weight:http://www.psc-literature.org/dosecalc.htmSuppose that your daughter's weight

is 140 lb, and her total daily amount of ursodiol taken is 1800 mg per day, then her dose in mg/kg/d would be 28.35, which would represent a high dose [typically 25- 30 mg/kg/d]. Basically, you have to first convert weight in lb to kg, by dividing by 2.205. Weight in kg is then divided into the daily mg dose of medication to give the dose calculated as mg/kg/d. It's O.K. to split the dose into morning and night ... this is exactly what our son does.Best regards,Dave (father of (21); PSC 07/03; UC 08/03) __________________________________________________

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Thanks for the websites and your knowledge on this disease. I am so new to this and everyday I am learning more. As far as the dosage amount for the URSO, I thought is was kind of funny how you hit my daughters weight exactaly for the calculations.........she is 5'8 and weighs 140lbs. Thanks again. wrote: Dear "tmcos4";ERCP is considered the most definitive for PSC diagnosis, but no doubt experienced pathologists can recognize PSC from biopsy alone. The

following text is from this article:________________________Chronic Cholestatic Liver Disease in Adults by Ortiz Zein, MD and D Lindor, MD, Best Practice of Medicine. January 2000. from the section on "Primary Sclerosing Cholangitis" ....Diagnostic Studies > Laboratory tests The most common abnormality is elevation of serum alkaline phosphatase in association with mild elevation of transaminases. Serum bilirubin levels are only mildly elevated early on, but increase with disease progression or with occurrence of complications.Diagnostic Studies > Radiologic studies Cholangiography is the most important diagnostic study for PSC. Endoscopic retrograde cholangiopancreatography (ERCP) is preferred, but percutaneous transhepatic cholangiography is indicated when some portions of the intrahepatic biliary tree cannot be visualized on endoscopic

retrograde cholangiopancreatography (ERCP). Typical findings of PSC on ERCP include multifocal strictures of the intrahepatic and extrahepatic biliary tree. The intervening segments of normal to dilated bile ducts give the classic "beaded" appearance. Magnetic resonance cholangiography permits good visualization of the biliary tree without the need for an invasive procedure [48] but does not allow for biopsy, brushing, or stricture dilatation.Diagnostic Studies > Histopathology A liver biopsy is indicated in patients with suspected PSC to establish the diagnosis and to stage the disease. Typical findings include absence of intralobular bile ducts in some portal tracts (ductopenia), duct proliferation, and periductal fibrosis with the occasional but almost pathognomonic onion-skin pattern with duct obliteration [21]. Accurate staging on the basis of a needle biopsy is difficult because

changes vary in severity in different parts of the organ. There are four stages: the portal stage, the periportal stage, the septal stage, and the cirrhotic stage, which is characterized by the development of regenerative nodules [13].Differential Diagnosis The differential diagnosis of PSC includes causes of chronic cholestasis such as PBC, drug-induced cholestasis, idiopathic adulthood ductopenia, cholestatic alcoholic liver disease, and others. Diseases with a similar cholangiographic appearance include AIDS-associated cholangiopathy, cholangiopathy after hepatic artery manipulation or chemotherapy, and extrahepatic duct obstruction caused by stones, strictures, or tumors. Table 4 shows a comparison between some characteristics of PBC and PSC.________________________for the full text of the above article, go to:http://www.psc-literature.org/wwwres.htmthen scroll down to "P" and click on the link:Primary Sclerosing Cholangitis (Best Practice of Medicine: Hepatology: Chronic Cholestatic Liver Disease in Adults (MerckMedicus)) Our son first had a biospy, and this did not show anything conclusive, so they did an ERCP to obtain the diagnosis. MRCP is not invasive and might be a good alternative if confirmation of diagnosis (based on labs and biopsy) is all that is required. ERCP allows for interventions (like opening bile duct strictures), but can sometimes result in complications such as pancreatitis.Please visit our "Medication Dose Calculator" to calculate ursodiol dose based on weight:http://www.psc-literature.org/dosecalc.htmSuppose that your daughter's weight

is 140 lb, and her total daily amount of ursodiol taken is 1800 mg per day, then her dose in mg/kg/d would be 28.35, which would represent a high dose [typically 25- 30 mg/kg/d]. Basically, you have to first convert weight in lb to kg, by dividing by 2.205. Weight in kg is then divided into the daily mg dose of medication to give the dose calculated as mg/kg/d. It's O.K. to split the dose into morning and night ... this is exactly what our son does.Best regards,Dave (father of (21); PSC 07/03; UC 08/03) __________________________________________________

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Dear Arne, Your point is well taken, I believe as time goes on an ERCP may very well be in our future. Her biopsy reports that 2 of the portal tracts have definitive periductal fibrosis with a concentric onion skin appearance. With the onion skin appearance and what I have read that seems to be a good indicator of PSC. Also, other tracts showed bile duct proliferation. Currently she has absolutely no symptoms whatsoever so do you wait for symptoms to appear of put her through something now that maybe needs or doesn't need to be done? Thanks again . stonehollow@... wrote: The problem with not doing an ERCP is that you have no chance of any therapeutic intervention (balloon dilatation/stenting). I've been symptom-free since mine in 2001 (I may not be typical, however). If you don't image the bile ducts, you don't know the extent of the problem.Arne55 - UC 1977, PSC 2000Alive and (mostly) well in MinnnesotaFrom: "tcmcos4" <tcmcos4>It seems many people have had ERCP to confirm diagnosis.My daughter(15) was scheduled for this June 15 but once the biopsy came back with the pathologist stating "Two unquivocal foci of periductal fibrosis suggestive of primary sclerosing cholangitis" the doctor cancelled the scope stating that there was really no need for it and he felt quite assured with the diagnosis. I felt comfortable with that at the

time... __________________________________________________

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