Primary biliary cholangitis (PBC) inflames and damages the tiny bile ducts in your liver. This causes your digestive fluids (bile) to build up and damage your liver. Without treatment, PBC can lead to liver scarring called cirrhosis. Fortunately, there are medicines to treat the disease.
With your doctor's help, you can create a treatment plan that will slow PBC and control your symptoms. But treating primary biliary cholangitis often takes some trial and error. The first medicine you take might not work for you.
Knowing what to expect from your treatment will help you be a more involved member of your care team. And if the first medicine you try doesn't work, it's time to have a conversation with your doctor about making changes to your treatment plan.
Your PBC Treatment Team
It takes a team of specialists to manage PBC. The first doctor you'll likely see after your diagnosis is a gastroenterologist. This doctor treats diseases of the digestive system, which includes the liver, stomach, intestines, pancreas, and gallbladder.
Your treatment team might also include a:
- Hepatologist. This specialist treats liver diseases.
- Primary care doctor. This may have been the first doctor you saw when you developed symptoms of PBC. Your primary care doctor will monitor your health during treatment and work with your PBC team to help slow your disease and prevent complications.
- Interventional endoscopist. This doctor uses a special scope to diagnose and treat problems with the liver and bile ducts.
- Radiologist. They’ll give you imaging tests like computed tomography (CT) and magnetic resonance imaging (MRI) scans.
- Physician assistants and nurses. They'll work with your doctors to manage your care.
- Registered dietitian. This expert in nutrition will help you plan a healthy diet for PBC.
- Liver surgeon. You might have seen this specialist when you had a liver biopsy to diagnose PBC. This surgeon will also perform a liver transplant if you need one in the future to treat liver failure.
Talking to Your Doctor About Your Treatment Plan
Your gastroenterologist or hepatologist will create a treatment plan for you. It's important to find a doctor who is experienced in treating PBC and who you trust. Then you can establish a good relationship with them.
While there's no cure for PBC, medicines can help to slow the disease, delay liver damage, and prevent complications. Other medicines treat symptoms such as tiredness and itching.
You'll be better equipped to work with your medical team if you understand your treatment options. The main treatment for PBC is ursodeoxycholic acid (UDCA), which helps to clear the stuck bile out of your liver and slow liver damage.
Some of the other medicines approved to treat PBC include:
- Obeticholic acid (Ocaliva)
- Seladelpar (Livdelzi)
- Elafibranor (Iqirvo)
Fibrates are another class of drugs your doctor might prescribe for treatment, and include fenofibrate (Fibricor, Lipofen, Triglide) and bezafibrate. They’re not FDA-approved to treat PBC, but some doctors prescribe them off-label to be taken with ursodeoxycholic acid to ease liver inflammation and itching.
You may need other medicines to manage PBC symptoms. For example, you might take antihistamines to control itching or eye drops to add moisture to dry eyes.
Your treatment is more likely to be successful if you're an active member of your health care team. You can do this by:
- Asking what to expect from your treatment
- Taking the medicine exactly the way your doctor prescribed it, even if you feel better
- Finding out what tests you need and going over the results with your doctor
- Trying not to miss any of your scheduled follow-up visits
- Communicating with your doctor during and between appointments
- Telling them about any problems you're having with your medicine, including side effects
- Taking care of yourself by eating a nutritious diet, exercising several times a week, and managing stress
How to Prepare for Your Appointment
You might only have a few minutes to spend with your doctor during each visit. Make the most of your appointments by coming to the office prepared.
Ask what to bring. When you make the appointment, find out whether your doctor needs your test results, medications list, or any other information.
Take a friend or family member. They can take notes for you and remember any questions you may have forgotten.
Track your symptoms and side effects. Your doctor will want to know what problems you're having, such as tiredness, dry eyes, or itching. Also let them know what side effects your medicine is causing.
List your medicines. Write down every medication you take, including vitamins, supplements, and drugs you bought over the counter. Include their doses and how often you take them.
Write down questions. Given the limited time you have with your doctor, a list of questions will ensure that you ask everything you need to know.
How to Discuss Your Symptoms
Tell your doctor about your symptoms. That way, they'll know what's going on with your PBC and whether they need to make any changes to your treatment plan.
Keep a journal or notebook. Write down any symptoms you're having, such as tiredness, itchy skin, and dry eyes or mouth. Note when each symptom happened and what you were doing at the time. Even if a symptom doesn't seem to be related to PBC, write it down. It could be important for your doctor to know about.
Questions to Ask Your Doctor
Asking lots of questions will help you better understand your treatment plan. When your doctor prescribes a new medicine or makes any changes to your plan, find out as much as you can about it.
Here are a few questions you might ask:
- What tests will you use to monitor my disease progression and liver health?
- What treatments do you recommend? How will they help?
- What side effects could I have with the medicine, and how can I relieve them?
- What are my other treatment options?
- What can I take to manage PBC symptoms?
- What dietary changes do you recommend?
- Should I take supplements? Which ones? How will they help me?
- What complications might I develop? How will I know if I have them?
- How severe is my liver damage?
- Will I need a liver transplant?
- Where can I find support?
Questions Your Doctor Will Ask You
Be ready to answer questions like these from your doctor during appointments:
- Does anyone else in your family have primary biliary cholangitis or liver disease?
- What symptoms are you having?
- How long have you had them?
- Do you have these symptoms all the time, or do they come and go?
- What makes them better or worse?
- What side effects are you having from your PBC treatment?
- What other medicines do you take, including herbal remedies, vitamins, and supplements?
What Results to Expect
The goal of treatment is to keep your liver healthy and delay or prevent the need for a liver transplant. Medicines work well at slowing primary biliary cholangitis, but you may need to be patient. It can take a few months to see improvements, and it could require some trial and error. Not everyone will get better with the first drug they try.
UDCA helps more than half of the people who take it. The rest either won't improve or they'll stop taking the drug because of side effects.
Many people live full, normal lives with PBC. But the course of this disease can be unpredictable. It's hard to know whether your disease will progress slowly, or if you'll develop cirrhosis quickly. Your doctor might not know all the answers. It's OK to ask for a second opinion if you're not getting answers or the results you expected.
What to Do When Treatment Isn't Working
If you've been on UDCA for six to 12 months and you haven't achieved your treatment goals, ask your doctor whether you need to add another medicine or switch to a different drug.
Eventually, even medicines that once slowed your disease could stop working. If your liver fails, your doctor will discuss a liver transplant with you. A transplant replaces your damaged liver with a healthy one from a donor. It's major surgery, but it could improve your outcome and quality of life. A transplant might even cure PBC, although the disease can come back.
Show Sources
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SOURCES:
American Liver Foundation: "Newly Diagnosed with Primary Biliary Cholangitis: Doctors Offer Advice," "Primary Biliary Cholangitis."
Cleveland Clinic: "Primary Biliary Cholangitis."
Mayo Clinic: "Primary Biliary Cholangitis," "Primary Biliary Cholangitis: What Does Successful Treatment Look Like?"
New York-Presbyterian: "Advanced Interventional Endoscopy," "Primary Biliary Cholangitis."
National Institute of Diabetes and Digestive and Kidney Diseases: "Primary Biliary Cholangitis (Primary Biliary Cirrhosis)."
UChicago Medicine: "Primary Biliary Cholangitis (PBC)."
