Navigating PBC treatment
Learn about first- and second-line primary biliary cholangitis (PBC) treatments, how progress is tracked, and ways to be more active in working with your doctor to help manage your PBC symptoms.
Actor portrayal.
Treating your PBC will take more than just starting a medication. You will need regular liver lab tests to monitor the disease, open lines of communication with your doctor, and some lifestyle changes to help manage your PBC symptoms.
Depending on the stage your PBC is in, your liver lab results, and the severity of your symptoms, you and your doctor will work together to select the treatment plan that may be right for you. If you track the intensity and frequency of your most troublesome PBC symptoms, such as itching at night that can lead to fatigue, it can help your doctor better match you to a PBC treatment plan that fits your situation.
How is PBC Treated?
Listen to Dr. Roytman give an overview of the main goals of PBC treatment and explain the difference between first- and second-line therapy.
Dr. Marina Roytman, clinical professor and director of the Liver Program, Fresno-UCSF
Person featured was compensated by Gilead.
IN THIS ARTICLE:
PBC treatments
What types of PBC treatments are available?
The first-line treatment, or “1L” treatment, most people living with PBC receive is called ursodiol (also known as urso or UDCA).
PBC treatment types:
FIRST-LINE THERAPY
PBC treatment begins with 1L therapy (ursodiol) taken by itself.
Many people positively respond to ursodiol treatment, but up to 40% of people with PBC will need to add an additional treatment to their PBC management plan.
SECOND-LINE THERAPY
Second-line (2L) therapy can be added to ursodiol or taken by itself, depending on your needs.
It is important to review liver labs with your healthcare team regularly to help track your PBC progression. If your treatment is not working well enough, it may lead to disease progression.
Ask your doctor if a 2L treatment could be your next step.
In one PBC study, around 50% of people were left untreated though they were eligible for 2L therapy.
How often is it recommended to assess my labs and treatment plan?
If you have been taking your 1L treatment for 3 to 6 months, ask your doctor if it is time to check your labs to see how you are responding to treatment.
Here is a recommended PBC assessment schedule that doctors may follow:
Every 3 to 6 months
Check lab work, including:
- Alkaline phosphatase (ALP)
- Bilirubin
- Alanine transaminase (ALT)
Every 6 to 12 months
Consider potential changes or additions to treatment, particularly if you are:
- Not seeing ALP normalization
- Still experiencing symptoms such as itch
- Having side effects
- Taking other medications for chronic conditions
Assess where you are every year
Regular assessments help your doctor understand the stage of your disease and how well your treatment is working. This can help your doctor find a treatment plan that addresses the level of disease and what is happening in your body.
- FibroScans and other imaging tools are used as well to check for liver cirrhosis or fibrosis and determine if any treatment changes are needed
What are some key goals of PBC treatment?
It is important to have an open dialogue with your healthcare team about your PBC treatment goals and how you are doing on treatment.
Ask your doctor about the following in order to help track how you are responding to your PBC treatment:
ALP normalization
When treating your PBC, it is important to improve your liver lab results, including ALP. Getting ALP to a normal level has been shown to help reduce the risk of PBC getting worse over time. While 1L treatments do a good job of reducing ALP levels for some people, you may need a 2L treatment to get those ALP levels down to normal or as low as possible. For eligible patients, starting a 2L treatment as soon as possible may be key to slowing disease progression.
Improvement in key lab values
ALP may be the biggest indicator of treatment response, but improving other lab levels (such as bilirubin) can also have an impact.
Improvement in PBC symptoms
Up to 80% of people with PBC experience itch. A reduction in symptoms, such as itching at night that can cause fatigue, is also important no matter which treatment(s) you’re taking.
Impact of symptoms on daily life
Everyone experiences symptoms differently and so it is important to talk with your doctor about how your symptoms affect your daily life. Talk to your healthcare team if you notice a change in your day-to-day routine.
Medication safety
If you have other chronic conditions, such as high cholesterol or osteoporosis, it’s important to tell your healthcare team so they can find a treatment that is OK to take with any other medications you need. Make sure to discuss all your medications and conditions with your healthcare team to determine which PBC treatment is right for you.
SYMPTOM MANAGEMENT AND TRACKING
What should I tell my doctor about my symptoms?
It’s important to bring up all your symptoms as part of the conversation about treatment. Your doctor needs to know the details about all of your symptoms—for example, itch, which can impact your daily life, such as your ability to sleep, work, or socialize.
Symptoms can fluctuate, you may have flare-ups on different days, and keeping note of when your symptoms occur and how severe they are can help you and your doctor figure out the right solution(s) for you.
Tips for talking to your doctor about your symptoms
These steps can help you discuss your symptoms in a clear, accurate, and timely way:
Step 1:
Note the frequency of your symptoms
Step 2:
Evaluate severity
Step 3:
Look for patterns
Step 4:
Tell your doctor
What lifestyle changes can I make to support PBC management?
Dietary changes such as adding leafy green vegetables and fresh fruits to your diet can help increase your vitamin intake, since PBC can sometimes contribute to difficulty absorbing certain vitamins.
Look for food rich in these vitamins:
Before taking any over-the-counter vitamin supplements, make sure to discuss them with your doctor. Some supplements can have negative interactions with prescription medicines that you may take, for PBC or other conditions.
While it doesn’t hurt to make adjustments that support your health, it’s important to remember that alcohol use did not cause your PBC. Researchers believe PBC can be caused by a mix of environmental triggers, inherited genetic traits, and changes in gene function (epigenetic factors). PBC is not curable, but appropriate treatment prescribed by your doctor can help manage this chronic autoimmune disease.
The information provided is not meant to replace your treatment plan or advice from your healthcare team.