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What Happens After a PBC Diagnosis: Tests and Next Steps

Medically reviewed by Ahmed Helmy, M.D.

Written by Emily Van Devender

Posted on October 1, 2026

After being diagnosed with primary biliary cholangitis (PBC), your doctor will guide you through a series of tests and screenings to learn more about your autoimmune liver disease, its severity, and exactly how it impacts your health.

A new liver disease diagnosis might raise questions for you and your family, but every test can offer new and useful information about your liver health and PBC outlook. This article provides an overview of what to expect after your PBC diagnosis, including tests, initial treatment, and monitoring.

🗳️ Have you talked with your doctor about what to expect after a PBC diagnosis?

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Establishing Your Baseline After a PBC Diagnosis

Your healthcare provider will want to establish your baseline levels of different parameters that tell you more about your liver function, including your blood levels of specific proteins or markers. As one myPBCteam member said, “I feel much better having baseline ‘at diagnosis’ measurements to which future readings can be compared.”

While no singular test can tell you how well your liver is functioning, a series of tests can provide a broader perspective of your liver health.

“I feel much better having baseline ‘at diagnosis’ measurements to which future readings can be compared.”

— A myPBCteam member

Assessing Liver Function and Disease Activity

Evaluating liver function after a PBC diagnosis typically involves several blood tests. Together, these tests help doctors understand liver health, bile flow, and signs of liver injury. Some tests, such as bilirubin and albumin, also provide information about how well the liver is working.

Your doctor may use the following blood tests to learn more about your PBC, liver health, and disease activity.

Antimitochondrial Antibodies

Antimitochondrial antibodies (AMA) are antibodies that react with certain proteins found in mitochondria, the parts of cells that produce energy. AMA are an important marker used to help diagnose PBC. Most people don’t have these antibodies in their blood, but about 95 percent of people with PBC do.

Serum Bilirubin

Bilirubin is a waste product from broken-down red blood cells. Normally, your liver removes it from your blood.

If you have PBC, a normal bilirubin level is generally a good sign. However, doctors look at bilirubin along with other factors, such as alkaline phosphatase levels and liver scarring, to estimate the risk of PBC getting worse. Higher levels can mean your PBC is at an increased risk of progressing and may be more difficult to treat. As PBC progresses, bilirubin levels tend to increase.

Alkaline Phosphatase

Alkaline phosphatase (ALP) is an enzyme that doctors measure to look for problems with bile flow and to track PBC activity. High levels of alkaline phosphatase are a sign of stress on the liver and a lower likelihood of responding well to first-line treatment.

Alanine Aminotransferase

Most people with PBC have mildly to moderately elevated levels of alanine aminotransferase (ALT) in their blood. An ALT test measures a substance from the liver that can leak into the bloodstream when liver cells are scarred or damaged. The test can help your doctor look for liver-cell irritation or damage.

Evaluating PBC Symptoms

Even though PBC often doesn’t cause symptoms in the early stages, documenting any present symptoms and their severity can help your doctor better understand your disease. Symptoms such as fatigue and itchy skin may be seen early in the disease, while jaundice or varices (enlarged veins) in the esophagus can appear later.

Telling your doctor about your symptoms, even if they seem mild, can help them understand how PBC is affecting your daily life, look for complications, and recommend treatments for symptoms such as itching or fatigue. As one member said, “I was having some fatigue but attributed it to getting older. I was also having gallbladder attacks. After having that removed, the attacks continued, requiring some more testing. That’s when I was diagnosed.”

Staging Your PBC

Your doctor may recommend additional tests that help them stage your PBC. Your PBC stage depends on how much fibrosis (scarring) is on the liver, so tests that help stage PBC involve measuring the scar tissue.

Noninvasive Fibrosis Assessment

Today, doctors often use noninvasive tests to estimate liver scarring. Transient elastography, often performed with a device called FibroScan, is commonly used to measure liver stiffness. Magnetic resonance elastography (MRE) is another imaging test that can measure liver stiffness and may be used in some situations.

“I thought I was in stage 1, but the FibroScan showed I was at stage 3. You may be scared, but it will give your doctor the information they need to help you.”

— A myPBCteam member

FibroScan and other noninvasive tests can give you a more accurate idea of your PBC stage than symptoms and blood tests alone. One myPBCteam member shared, “I thought I was in stage 1, but the FibroScan showed I was at stage 3. You may be scared, but it will give your doctor the information they need to help you.”

Liver Biopsy

Liver biopsy, which involves removing a sample of liver tissue with a needle and examining it under a microscope, can also be used to evaluate fibrosis and determine your PBC stage.

While a liver biopsy can be helpful for evaluating PBC or related conditions in some cases, it’s no longer a routine test for PBC diagnosis. However, several myPBCteam members have talked about getting a liver biopsy for staging.

“I'm going for a liver biopsy as soon as it gets scheduled, and that will help me confirm the PBC diagnosis and staging,” said one member. Another member added, “I found out my PBC stage with a CT scan followed by a biopsy.”

Screening for Common PBC Complications and Related Conditions

After your PBC diagnosis has been confirmed, your healthcare team may want to screen you for related conditions or common PBC complications.

Bone Health Concerns

Osteoporosis, or low bone density, is a common PBC complication that can put you at an increased risk for bone fractures. Doctors typically recommend getting a baseline bone density scan after being diagnosed with PBC to check your bone health.

Vitamin Deficiencies

As PBC progresses, your risk of vitamin deficiencies can increase. Your doctor may check your levels of fat-soluble vitamins, especially if you have more advanced cholestasis or jaundice. People who develop deficiencies may need vitamin supplements.

After a PBC diagnosis, your healthcare team may screen you for related conditions such as osteoporosis or vitamin deficiencies.

Other Related Conditions

Your doctor may recommend additional screening tests for conditions related to PBC. Based on your stage of PBC and other risk factors, they might screen you for:

Liver cancer
Varices
Thyroid problems
Portal hypertension (high blood pressure in the veins that move blood to the liver)

Starting Treatment and Measuring Your Response

Most people who are eligible for treatment start ursodiol (UDCA, sold as Actigall, Urso 250, and Urso Forte) soon after a PBC diagnosis. Testing to determine the stage of liver disease can take place while treatment is getting started.

Once you start treatment, your doctor will monitor blood tests to see how well it’s working. Doctors often assess the response to UDCA within about six to 12 months using tests such as alkaline phosphatase and bilirubin, along with other information about your liver health. Based on these results, they can determine if UDCA is helping your PBC.

If UDCA doesn’t control PBC well enough, your healthcare provider may consider other U.S. Food and Drug Administration (FDA)-approved treatments. Your doctor may also recommend treatments for specific PBC symptoms if you have them, like medications for itching.

They may also suggest healthy lifestyle changes, such as quitting smoking and getting regular exercise. Some people may be advised to limit sodium, especially if they develop fluid buildup such as swelling or ascites.

Talk to Your Doctor

If you’ve recently been diagnosed with PBC, talk to your doctor about what to expect as your next steps in PBC monitoring and management. They can explain what your disease stage means and how often you will need follow-up testing. Liver blood tests are commonly checked every three to six months, while other tests may be done more or less often depending on your individual risk.