How to treat primary biliary cholangitis and where to find support

Primary biliary cholangitis (PBC) is a chronic autoimmune disease. Researchers estimate that about 65 out of every 100,000 women in the United States have PBC (this number is much lower in men). When a person has PBC, the immune system attacks the small bile ducts, which can cause damage to the liver. 

Many people with PBC do not have any noticeable symptoms when diagnosed. When symptoms do appear, the most common ones amongst PBC patients include fatigue and itchy skin. According to the American Association for the Study of Liver Diseases (AASLD), fatigue has been found in 50-78% of PBC patients. Fatigue from PBC can be constant or slowly progressive. Several early studies showed that itching occurs for 20-70% of PBC patients.

Wondering how to manage your PBC symptoms and where to find support? We share common treatment options and ways for you to get involved with the PBC community. 

There are treatment options for primary biliary cholangitis, but there is no cure 

Unfortunately, there is no cure for PBC, but there is medication available to treat the disease itself and key symptoms. If none of these work for you, ask your doctor about off-label options, too.

To treat the disease itself, doctors typically prescribe the following: 

Ursodeoxycholic acid (UDCA) is a medication that helps move bile through your liver. It can improve liver function and reduce liver scarring. It's less likely to help with symptoms like itching and fatigue.

Obeticholic acid (Ocaliva) is a medication that works by improving bile flow and reducing inflammation. It may be offered as an option for treating PBC, either in combination with UDCA (if UDCA is not working well enough) or on its own (for people who cannot take UDCA).

Liver transplant is a procedure that may help prolong your life when medications no longer control PBC and the liver begins to fail. Liver transplants have good long-term outcomes for people with PBC, but sometimes the disease comes back several years later in the transplanted liver.

To treat the signs and symptoms of PBC, your doctor might suggest:

Treatment for fatigue: Daily habits, diet and exercise, and other health conditions can affect how tired you feel, so working on a plan to ensure you are taking care of yourself in these categories is critical.

Treatment for itching: Cholestyramine, colestipol, and colesevelam (Anion-Exchange Resins) are resins that bind to negatively charged anions, such as bile acids. They have a long history of clinical use when it comes to itching. Some small clinical trials have shown that Rifampicin, a pregnane X receptor agonist, has been effective at treating itching in patients with PBC. Opioid antagonists may also reduce an itching sensation.

Where individuals with PBD and their families can find support

People living with PBC, their loved ones, and their care partners are not alone. There are a variety of PBC resources and support networks out there: 

PBCers: The PBCers Organizations’ mission is to offer education and support to PBC patients, family members and friends, and to raise funds to help research the causes and cure for PBC. They have local contacts and group meetings, with the aim of helping one another on their respective PBC journeys.

PBC Foundation: The PBC Foundation, based in the UK, is one of the biggest PBC organizations in the world. Their work is dedicated to providing support and information to those affected by PBC. They offer a variety of patient support services and host events focused around PBC.

Living with PBC highlights individual PBC stories, shares information about events, and has a video hub.

Primary Biliary Cholangitis Facebook group: This is a private group with over 4,000 members discussing their experiences with PBC. 

American Liver Foundation: The American Liver Foundation is a national organization for patients, families, and professionals that is dedicated to understanding liver diseases. They have an array of resources, including events, clinical trial opportunities, a video library, and blogs.

New clinical trials are evaluating the safety and efficacy of investigational treatments for PBC and observational monitoring trends in people living with PBC. Interested in finding and participating in a PBC clinical trial near you? Start your search below.