The American Liver Foundation recently asked 20 doctors to share the advice they give to people newly diagnosed with Primary Biliary Cholangitis (PBC). Their answers are below.

They reassure their patients…

• The progression of this condition is slow.
• Worsening symptoms do not necessarily mean worsening liver disease.
• There is therapy (ursodeoxycholic acid “Urso”) that can prevent progression to cirrhosis and relieve pruritus (itching) in most people. With current therapies, this disease is very unlikely to cause early mortality for those who do not have cirrhosis on presentation.
• There is another treatment option (obeticholic acid)  available for partial or non-responders or those intolerant of Urso.
• There are good treatment modalities for controlling PBC in most cases, but even better alternatives are on the horizon.
• You are not alone. Support and information are available.
• Most people with PBC live to a ripe old age and die with the disease, not of it, particularly if they present at an early stage histologically and are asymptomatic at presentation – and if they have regular testing, ongoing monitoring and take their medications.
• Your life should not be dictated by the disease. You can go for years without issues.

They make recommendations…

• Develop a lifelong relationship with a physician or provider you trust.
• Seek referral to a specialist familiar with PBC, a board certified hepatologist if possible.
• Follow your liver tests results closely with your doctor, especially your alkaline phosphatase.
• Take a multivitamin without iron.
• Avoid taking herbal or other supplements that may injure the liver.
• Avoid excessive alcohol.
• Be a compliant patient, keep all appointments and do all prescribed testing, take prescribed medications regularly and try to live a healthy life style:  good diet, regular exercise, manage stress.
• Do not to look backward. Many individuals have a delay in diagnosis. Wishing you had done something different is not productive.

They discuss medical challenges…

• Symptoms of PBC can be managed with medication, but it may take time to figure out what is best through trial and error.
• Individuals with PBC have an elevated likelihood of developing osteoporosis and other autoimmune diseases  (of the mucus membranes, gastrointestinal tract, and thyroid gland). They may have eye and mouth dryness.
• The progression of PBC can be unpredictable; it’s hard to know at first if a person will develop significant liver disease.
• If you do develop significant liver disease with liver failure, liver transplantation is your “life insurance policy.”