Living With Primary Biliary Cholangitis

Living with primary biliary cholangitis (PBC) can be hard. You may have symptoms that are tough to manage. Stress about tests and treatment is normal. It can feel like you have limited control over your health.

The biggest thing we have control over is our lifestyle. Diet and exercise play an important role in managing PBC. This article explains some aspects of life with PBC. Talk to your doctor about how PBC affects you.

Managing symptoms

Fatigue and itchiness are the most common symptoms of PBC. For some people, they are mild. For others, fatigue and itchiness have a large impact on daily life. Fatigue can make it harder to manage PBC.¹

Managing fatigue and itchiness is a large part of life with PBC. Many people find that a daily routine helps. Structure daily activities in a way that works for you. This can help reduce stress, manage symptoms, and improve mental health.¹

Different strategies work for different people. Your doctor may suggest managing itchiness with:¹

• Antihistamines, especially if itching keeps you awake at night
• Cholestyramine powder mixed with food or liquids
• Medicines to reduce your brain’s response to itching, such as rifampin or sertraline
• Creams or lotions
• Cooling your skin

Some common ways to manage fatigue include:¹

• Daily exercise to keep up your energy
• Proper hydration
• Good sleep hygiene
• Practices to reduce stress, such as yoga or meditation

Your doctor may suggest managing other symptoms with:¹

• Artificial tears to ease dry eyes
• Saliva substitutes or chewing gum to help dry mouth
• Weight training to build bone strength

Diet and nutrition

Diet and nutrition are important for people with PBC. A healthy diet can improve fatigue and itchiness. It can also prevent complications.²

Good nutrition helps your liver work well. Talk to your doctor about your diet. They may suggest:²

• Avoiding or limiting alcohol
• Eating plenty of fruits, vegetables, and whole grains
• Avoiding raw or undercooked meats and fish
• Choosing foods with unsaturated fats, like nuts, avocados, and salmon
• Eating fermented foods, such as yogurt
• Reducing saturated fats, sugary foods, and salty foods
• Drinking coffee, which may have benefits for the liver
• Getting plenty of calcium and vitamins A, D, E, and K

Regular liver monitoring

Doctor’s appointments are a big part of life with PBC. During treatment, you will get regular liver testing. Routine bloodwork can show doctors if treatments are working. It can also help determine what to do if liver function gets worse.¹

You may see a doctor every few months. Some people see a doctor more often. Appointments can be stressful. Traveling to them can interfere with daily life and plans. It is normal to be anxious about test results.¹

Preparing for appointments can help reduce stress. Here are some tips to make the most of your doctor’s visits:¹

• Ask your doctors any questions about treatments and results
• Write down questions ahead of time
• Write down details of your symptoms to make them easier to explain to doctors
• Bring a list of all the medicines you take
• Take notes during the visit, or bring a family member or friend to take notes

Financial strain

The financial cost of PBC depends on your insurance, stage of PBC, and other factors. With insurance, treatments for early stages of PBC are relatively affordable. But PBC can still have a large economic burden. People with PBC may face costs related to:³

• Medicines and other treatments
• Traveling to doctors’ offices
• Missed work due to symptoms, appointments, or treatments
• Hospital visits

Early treatment reduces the financial strain of PBC. PBC can delay or prevent liver scarring (cirrhosis). People with cirrhosis need frequent hospital visits. Healthcare costs for people with PBC who have cirrhosis are more than double the costs for those without cirrhosis.³

Talk to your doctor if costs are a barrier to treatment. Ask for a referral to a social worker. A social worker can talk to you about financial support.