PBC TREATMENT AND MONITORING
If treatment isn’t working the way it should, primary biliary cholangitis (PBC) can worsen and damage the liver. By monitoring your lab results and assessing symptoms like fatigue over time, you and your doctor can identify signs of progression early and adjust your treatment plan.
First-line treatment isn’t always enough
Most people with PBC are treated with an oral (by mouth) medicine called ursodiol (ursodeoxycholic acid, also known as UDCA).
Up to half of people with PBC do not respond well enough to ursodiol and may require additional treatment.
Inadequate response to treatment
An inadequate response means you are not responding to treatment as well as you could be. This may mean that the treatment is:
- Not lowering alkaline phosphatase (ALP) levels enough or not reaching normal range
- Not lowering ALP levels quickly
- Worsening or not addressing symptoms
An inadequate response to treatment may lead to further disease progression.
- No matter where you are in your journey with PBC, discussing your treatment goals with your doctor early and often can help ensure you’re getting the most out of your care plan.
An inadequate response means you are not responding to treatment as well as you could be. This may mean that the treatment is:
- Not lowering alkaline phosphatase (ALP) levels enough or not reaching normal range
- Not lowering ALP levels quickly
- Worsening or not addressing symptoms
Not lowering alkaline phosphatase (ALP) levels enough or not reaching normal range
Not lowering ALP levels quickly
Worsening or not addressing symptoms
An inadequate response to treatment may lead to further disease progression.
- No matter where you are in your journey with PBC, discussing your treatment goals with your doctor early and often can help ensure you’re getting the most out of your care plan.
No matter where you are in your journey with PBC, discussing your treatment goals with your doctor early and often can help ensure you’re getting the most out of your care plan.
Ask your doctor about normalizing ALP
Sometimes treatment controls ALP levels but doesn't necessarily lower them to normal range. Normalizing ALP is key to reducing the risk of disease progression.
Talk to your doctor about normalizing your ALP and managing your symptoms to make sure you're on the right treatment plan for you and your goals.
Have you heard there are add-on treatment options available?
Monitoring PBC progression
PBC is a progressive disease, which means it can get worse over time. Slowing progression as early as possible is key to management.
Some people may be more likely to experience disease progression or poor treatment response
Certain factors could put some people with PBC at a higher risk of disease progression, including:
- People diagnosed with PBC before the age of 45
- Men with PBC
- People of color with PBC
- People with high ALP levels at diagnosis
- People with additional autoimmune diseases
Understanding these factors can help you advocate for yourself and monitor disease progression.
Ready to talk
to your doctor
about optimizing your
treatment plan?
Bring the Doctor Discussion Guide to your next appointment and see if a change in treatment approach could help reduce the impact of PBC on your life.
Bring the Doctor Discussion Guide to your next
appointment and see if a
change in treatment
approach could help reduce
the impact of PBC on your life.
Understanding these factors can help you advocate for yourself and monitor disease progression.
PBC guidelines recommend:
Liver lab test results to be reviewed every 3-6 months
Treatment plans to be evaluated and adjusted, if needed, every 6-12 months
Lifestyle approaches that may help support your energy and well-being
Living with PBC-related fatigue can be challenging, and what helps can vary from person to person. Small, steady lifestyle adjustments may help improve overall energy and support how you feel day to day. Talk with your doctor about what kind of approaches may be a good fit for your care plan.
"I realized life with PBC can get easier and I don’t need to reshape myself to expectations that nobody will ever fully understand my experience."
-Amber, living with PBC
Does this sound like your experience with PBC?
A look into different PBC treatment scenarios
This is Jessica
Ursodiol + add-on treatment
5 years navigating PBC diagnosis
Treatment: Ursodiol + add-on treatment
Symptoms: Fatigue, dry eye (from Sjogren’s syndrome), and itch
When Jessica’s ALP levels started rising, her doctor prescribed an add-on treatment to help. However, Jessica’s ALP levels continue to rise, and she has been experiencing intense fatigue.
This is Linda
Stopped treatment
2 years navigating PBC diagnosis
Treatment: None
Symptoms: Persistent fatigue and itching (treated with a prescription allergy medication)
Linda stopped taking ursodiol 2 years ago
because of side effects (nausea, vomiting,
hair loss). Her doctor prescribed a different
medicine, but Linda stopped taking this
medicine too.
Linda stopped taking ursodiol 2
years ago because of side effects
(nausea, vomiting, hair loss). Her
doctor prescribed a different
medicine, but Linda stopped
taking this medicine too.
This is Michael
Ursodiol only
22 years navigating PBC diagnosis
Treatment: Ursodiol
Symptoms: Persistent fatigue and itching
Michael’s ALP levels are rising despite being
treated with ursodiol since his diagnosis more
than 20 years ago. Because his ALP levels are
rising, his doctor is closely monitoring him and
considering additional treatment.
Michael’s ALP levels are rising despite being
treated with ursodiol since his diagnosis more
than 20 years ago. Because his ALP levels are
rising, his doctor is closely monitoring him and
considering additional treatment.
You are your own best advocate for your health, and you have the power to be involved in your PBC care plan
Make the most of your next doctor visit with a discussion guide designed to help you talk through symptoms, lab results, and treatment goals.
Explore additional PBC resources to help you on your journey
