where can i find support and information?
PSC Partners Seeking a Cure is a 501(c)3 nonprofit foundation that endeavors to find a cure for primary sclerosing cholangitis.
for more information, or to help fund the cure:
Please consider joining our mailing list at:
Visit our website at:
An online PSC support group was established in 1998. This is a message board (forum) on Yahoo/Health, where PSC patients
primary sclerosing cholangitis
and caregivers can exchange information and lend support/advice to one another:
or contact Ricky Safer by e-mail at:
In the United Kingdom, there is a similar group that publishes a newsletter and holds an annual meeting in
Oxford with Dr. Roger Chapman, a leading PSC expert:
or send a tax-deductible donation to:
PSC Partners Seeking a Cure
5237 S. Kenton Way
There is also a parents' support group, especially helpful for parents of young children, as PSC presents itself differently in
Englewood, CO 80111
pediatric patients, and is treated accordingly. This group is found at:
To order more brochures, please write to us at:
Pre-teen kids and teens with PSC can get acquainted with others through a new online board:
For post-transplant PSC patients, there is a support group with discussions based on the special needs of being post-surgical,
immunosuppressed, and their "at-risk" status. You may join this group at:
For social networking, sharing, and learning about living with PSC in your 20s and 30s, check out Facebook.
To join the group, Log into Facebook at www.facebook.com and then type in:
primary sclerosing cholangitis
For PSCers and caregivers in Israel, there is an Israeli Facebook group. Log into Facebook at
www.facebook.com and then type in:
For information on:
our local/regional support groups
our free quarterly newsletter
This brochure was written by persons without formal
our annual conference for PSC patients and caregivers
medical training. The information in this brochure is not
our other brochures:
intended nor implied to be a substitute for professional
Living with PSC and Diagnosing PSC
medical advice, diagnosis, or treatment. Please consult with
your doctor before using any information presented here.
A PSC Literature web site was developed in 2004 to provide PSC patients and caregivers easy access to a vast body of
The views and opinions expressed herein are not
information concerning PSC and allied illnesses:
intended to endorse any product or procedure.
For detailed information on inflammatory bowel disease, please visit the Crohn's and
Colitis Foundation of America (CCFA) web site at:
A Publication of PSC Partners Seeking a Cure
psc & medications
To calculate your dose (based on pounds),
sclerosing cholangitis resembling autoimmune
Primary sclerosing cholangitis (PSC) is a cholestatic
multiply your daily dose in mg by 2.2, and
pancreatitis (AIP). The latter group is estimated
liver disease, meaning that bile flow from the
divide by your weight in pounds (e.g., 2.2 x
There are some research studies in progress treating
to comprise about 7-10% of patients with PSC.
liver to the small bowel is slow or stagnant.
1200 mg/180 lb = 14.6 mg/kg).
PSC patients with oral Vancomycin to see if there is
The AIH/PSC overlap syndrome tends to be more
Accumulation of toxic bile acids in the liver
a therapeutic benefit.
common in children.
can result in damage to liver cells, and increase
Another unproven, but suggested benefit of
potential for cancer development in the bile ducts
Ursodiol may be reduction in risk of colon cancer
and colon. Medications used for PSC include Urso
One of the major challenges in PSC is the occurrence
Medications are rarely free of side effects; some
( which stimulates bile flow and protects liver cells
of bacterial cholangitis; a bacterial infection of the
side effects may be mild, others severe. When
against toxic bile acids), Cholestyramine (a bile
biliary tree. Such infections are often associated
prescribed any medication, you should read the drug
sequestering agent which treats pruritus (itching)),
with chills and fever, right upper-quadrant pain,
safety sheet provided and become familiar with all
or compounds that stimulate bile acid transport
Rifampin (Rifampicin) is an antibiotic mostly used
dark urine, pale stools, nausea and vomiting. If
potential adverse effects of the medication. Consult
and metabolism, such as Rifampin (which may also
for the treatment of tuberculosis. However, because
left untreated, these biliary infections can rapidly
your doctor immediately if you experience any of
it activates receptors in the gut and liver, it has also
been shown to help relieve pruritus (itching). Urso
progress to sepsis and death. Antibiotics used
the symptoms described in the drug safety sheet(s).
and Rifampin generally work well together. However,
to treat these infections include Ciprofloxacin
Rifampin may cause changes in other medications
(Ursodiol, Urso Forte, UDCA, URSO-250, Actigall,
you are taking and alter the way they react in your
There are very few large, scientifically controlled,
system. Make sure your doctor is aware of all other
peer reviewed trials for alternative therapies
medications you are taking along with Rifampin, in
Repeated cholangitis attacks are sometimes
(non-prescription remedies). The Food and Drug
Urso is a popular medication used for patients
order to avoid any possible conflicts.
managed by a rotating antibiotic regimen often
Administration does not regulate the manufactured
diagnosed with PSC (primary sclerosing cholangitis).
termed "ABC", in which patients take Augmentin,
quality of herbal supplements; herbal labels usually
Originally prescribed for the treatment of gallstones,
Bactrim DS, and Cipro alternately to minimize
do not indicate dosage recommendations for
Urso has been shown to help bile acids travel through
development of bacterial antibiotic resistance.
Cholestyramine (Questran) is used to treat high
specific conditions. PSC and its related diseases are
the body with greater ease. In addition, some anti-
cholesterol and also has been proven effective
complicated and we laymen just don't know enough
inflammatory properties have been noticed. Urso
in combating pruritus due to bile blockages.
– some remedies may even be unsafe, and further
helps to fight toxic bile acids that build up in the liver
Endoscopic procedures such as ERCP can potentially
Cholestyramine is not absorbed in the bloodstream;
damage your liver.
cells. In the United States, Urso is available under
introduce bacteria into the bile ducts. Many centers
it remains inside the gut until excretion.
different trade names such as Actigall (typically 300
prescribe antibiotics for patients undergoing ERCP
Cholestyramine and Urso cannot be taken together,
PSC Partners Seeking a Cure believes that medical
mg. capsules), Urso (typically 250 mg tablets), and
to prevent this complication. However, there are
as this will interfere with Ursodiol absorption. The
professionals should be the primary source of
Urso Forte (typically 500 mg tablets.) Urso Forte
conflicting results concerning the efficacy of such
general recommendation is to stagger doses of the
information for treating your PSC. Treatment tested
and Urso 250 are the only FDA approved treatment
prophylactic antibiotics in prevention of post-
two medications at least four hours apart. It has
over the years has worked for many patients. We
for patients with PBC (primary biliary cirrhosis), a
an unfortunate consistency (frequently likened to
believe it is prudent to be cautious with over the
disease similar to PSC. Another variation of Urso is
"drinking liquid sand"), but there are acceptable
counter remedies, vitamins/minerals, and herbals.
available in Australia under the name Ursofalk (250
methods to make it more palatable.
There may be interactions with other medications,
mg capsules). Ursofalk is also available in a liquid
Corticosteroids, and other immunosuppressants,
and sometimes even between herbals and vitamins.
formulation for pediatric patients.
Some of these include: mixing with apple-
have been found to be ineffective in favorably
Always ask your doctor when you make any change
sauce, apple juice, Sunny-D®, etc. Basically,
altering the course of classic PSC. However, it
in your health routine and what you are doing to
Ursodiol is typically prescribed in dosages of 15-30
use any cool or cold liquid or smoothie
should be emphasized that there may be sub-groups
manage your disease.You might want to go to http://
mg/kg a day. The benefit of high-dose Ursodiol is
(heating can inactivate the drug).
of patients who may show excellent response to
medlineplus.gov/ to look at these two sections:
questionable, and a recent study suggests that high
corticosteroids. Thus, it is essential to identify these
Drugs, Supplements and Herbal Information and
doses may actually be detrimental. For this reason,
patients as early as possible in the disease course.
also Complementary and Alternative Therapies.
most hepatologists prescribing Ursodiol today will
These patients include those with autoimmune
use doses in the range of 15 to 20 mg/kg a day.
hepatitis (AIH)/primary sclerosing cholangitis
(PSC) overlap syndrome, and patients with IgG4
"Medicinal crops" in Ethiopia - Current status and future potentials- Japan Association for International Collaboration of Agriculture and Forestry In response to the Development Initiative which was proposed by the then Prime Minister Koizumi on the occasion of the WTO ministerial conference in Hong Kong in December 2005, the Ministry of Agriculture, Forestry and Fisheries has announced "the Initiative by Ministry of
Update on Aspirin and Plavix Sensitivity and Resistance Testing: David L McGlasson, MS, MLS(ASCP)CM, 59th Clinical Research Division,, Wilford Hall Medical Center, Lackland AFB, TX, 78236-5300 This information is for education only and is not a product endorsement. • Aspirin irreversibly acetylates platelet cyclooxygenase,