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Dave and to all others who replied,

Thank you for your thoughts. I can tell that I have found a valuable resource

and support in this group. Suzanne is on asacol and ursodiol as well as

purinethol. She was on sulfasalazine for awhile, but that gave her awful hives.

They took her off of that and did not replace it with another 5-ASA, until the

bledding returned, that is when they started her on the asacol. She has been on

the purinethol from the beginning. She also was on prednisone for awhile (while

on the sulfasalazine). They increased the sulfasalazine at the same time that

they introduced the ursodiol and started slowly decreasing the predisone, so it

took awhile to determine that the hives were from the sulfa and not the

ursodiol. I think the prednisone was preventing the hives initially. She also

was on an enema cortizone for two weeks prior to starting the asacol. The

problem with the asacol is that it seems like she isn't digesting it well, there

are whole pills in her stools every day, but since she takes nine pills a day I

am assuming that something is getting put to use.

I know (have read) that it can be a long process to get the UC under control.

When we first got these diagnoses I was so focused on the PSC in terms of

learning about it, that I didn't spend much time learning about the UC. It

seemed to me that the PSC was much more threatening. I guess now I am just

beginning to focus on the UC as well.

I am confused about the medications though. Initially the Drs. told me that

there was really no medication or treatment for the PSC, but when he put her on

the ursodiol he said it was for the liver. Can someone clarify for me what the

ursodiol is for? I am also a bit unclear as to what the 6-MP medications are for

- I know they call it immunomodulator therapy, but I am unclear as to whether

that is just for the UC, or if that will help with the PSC as well.

Again, I thank you all for this group . . . and your understanding.

LINDA

Hello ;

Welcome to the group. It is very sad to hear of another teen affected

by this disease, and to know that another parent is going through

this difficult time. If it is any consolation, my wife Judy and I

also experienced the same emotions when our son was diagnosed.

Everyone has their own coping mechanisms ... I have found it

particularly helpful to read as much as I can. There's a huge amount

of research being done on inflammatory bowel diseases and autoimmune

diseases, and it is quite a challenge to keep up with it all. I wake

up every morning and think ... " today I will find another few pieces

of the PSC puzzle ... some of these pieces may come in handy in the

future " . Try to keep your spirits up, and think positive, and be

thankful for every day of wellness.

I do hope that your daughter's UC can soon be brought under control.

Is your daughter on medications, such as asacol and/or ursodiol? Our

son has responded very well to these medications, and his recent

colonscopy (1 year after initial diagnosis) has shown that his UC is

now pretty quiescent. We are thinking about giving him " probiotics "

based on what we have heard from other members of the support group,

and from what we have read in the literature.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

PRIMARY SCLEROSING CHOLANGITIS LITERATURE

http://home.insightbb.com/~rhodesdavid/

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Hello ;

According to MedlinePlus, 6-mercaptopurine (6-MP) [Purinethol] is

used for several autoimmune disease, but PSC is not listed amongst

these.

" Mercaptopurine also is used to treat many types of autoimmune

diseases such as systemic lupus erythematosus, rheumatoid arthritis,

acute idiopathic polyneuritis, acute idiopathic nephrotic syndrome,

psoriatic arthritis, erythroid aplasia, or myelofibrosis; idiopathic

hemolytic anemia; macroglobulinemia; idiopathic thrombocytopenia

purpura; idiopathic pulmonary hemosiderosis; multiple sclerosis;

myasthenia gravis; uveitis; and ulcerative colitis. "

It is widely used in UC and Crohn's as an " immunosuppressive " agent

that does not have the same side-effects of steroids. It seems to be

especially useful for those UC patients not responding to 5-

aminosalicylic acid alone:

______________

Aliment Pharmacol Ther. 2002 Jul;16 Suppl 4:21-4.

Review article: maintenance of remission in ulcerative colitis.

Kamm MA.

St Mark's Hospital, London, UK. kamm@...

Seventy percent of patients with ulcerative colitis can expect to

experience a relapse over a 12 month period. Sulfasalazine was the

first drug demonstrated to reduce this relapse rate to 21 percent.

Subsequent studies have demonstrated that 5-aminosalicylic acid (5-

ASA) is the main active component, and preparations containing only 5-

ASA have similar efficacy to sulfasalazine. 5-ASA is readily absorbed

from the small intestine; to achieve high a colonic lumenal

concentration therefore requires special release formulation. A

variety of 5-ASA preparations is available, differing in their

release mechanism, efficacy and side effect profile. Most patients

can be maintained in remission using oral 5-ASA medication. For

patients with distal or left sided disease the use of rectal 5-ASA is

also of proven benefit in maintaining remission. Some patients with

frequent or severe relapses require stronger immunosuppression, and

in these patients azathioprine or 6-mercaptopurine (6-MP) are of

proven benefit. Azathioprine is also invaluable for maintaining

remission in patients who have been treated with cyclosporin for a

fulminant acute episode of colitis. The exciting spectre of natural

bacterial therapies (probiotics) deserves further exploration.

PMID: 12047255

_____________________

Ursodiol does several things: it seems to protect liver cells

againsts toxic bile acids, preventing cell death (apoptosis); and it

increases bile transport processes, as reviewed in the following

paper:

Hepatology. 2002 Sep;36(3):525-31.

Ursodeoxycholic acid in cholestatic liver disease: mechanisms of

action and therapeutic use revisited.

Paumgartner G, Beuers U.

Department of Medicine II, Klinikum Grosshadern, University of

Munich, Munich, Germany. Gustav.Paumgartner@...

Ursodeoxycholic acid (UCDA) is increasingly used for the treatment of

cholestatic liver diseases. Experimental evidence suggests three

major mechanisms of action: (1) protection of cholangiocytes against

cytotoxicity of hydrophobic bile acids, resulting from modulation of

the composition of mixed phospholipid-rich micelles, reduction of

bile acid cytotoxicity of bile and, possibly, decrease of the

concentration of hydrophobic bile acids in the cholangiocytes; (2)

stimulation of hepatobiliary secretion, putatively via Ca(2+)- and

protein kinase C-alpha-dependent mechanisms and/or activation of p38

(MAPK) and extracellular signal-regulated kinases (Erk) resulting in

insertion of transporter molecules (e.g., bile salt export pump,

BSEP, and conjugate export pump, MRP2) into the canalicular membrane

of the hepatocyte and, possibly, activation of inserted carriers; (3)

protection of hepatocytes against bile acid-induced apoptosis,

involving inhibition of mitochondrial membrane permeability

transition (MMPT), and possibly, stimulation of a survival pathway.

In primary biliary cirrhosis, UDCA (13-15 mg/kg/d) improves serum

liver chemistries, may delay disease progression to severe fibrosis

or cirrhosis, and may prolong transplant-free survival. In primary

sclerosing cholangitis, UDCA (13-20 mg/kg/d) improves serum liver

chemistries and surrogate markers of prognosis, but effects on

disease progression must be further evaluated. Anticholestatic

effects of UDCA have also been reported in intrahepatic cholestasis

of pregnancy, liver disease of cystic fibrosis, progressive familial

intrahepatic cholestasis, and chronic graft-versus-host disease.

Future efforts will focus on definition of additional clinical uses

of UDCA, on optimized dosage regimens, as well as on further

elucidation of mechanisms of action of UDCA at the molecular level.

Publication Types:

Review

Review Literature

PMID: 12198643

_______________________

In addition, it seems to protect against colon cancer:

Pardi DS, Loftus EV Jr, Kremers WK, Keach J, Lindor KD 2003

Ursodeoxycholic acid as a chemopreventive agent in patients with

ulcerative colitis and primary sclerosing cholangitis.

Gastroenterology 124: 889-893.

and against hepatobiliary malignancies:

Brandsaeter B, Isoniemi H, Broome U, Olausson M, Backman L, Hansen B,

Schrumpf E, Oksanen A, zon BG, Hockerstedt K, Makisalo H,

Kirkegaard P, Friman S, Bjoro K 2004 Liver transplantation for

primary sclerosing cholangitis; predictors and consequences of

hepatobiliary malignancy. J. Hepatol. 40: 815-822.

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

PRIMARY SCLEROSING CHOLANGITIS LITERATURE

http://home.insightbb.com/~rhodesdavid/

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The problem with the asacol is that it seems like she isn't

digesting it well, there are whole pills in her stools every day, but

since she takes nine pills a day I am assuming that something is

getting put to use.

***You could try PENTASA or COLAZAL. I tryed both because of the same

issue with Asacol. Both of these meds are for UC. I beleive they are

micro-granules. I never noted any capsules in my stool.

Just my experience with them.

Andi

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