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 and then type in: primary sclerosing cholangitis For PSCers and caregivers in Israel, there is an Israeli Facebook group. Log into Facebook at 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 address pruritus). 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, ABC Regimen
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 ERCP pancreatitis.
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 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



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