TREATMENT RESPONSE & PROGRESSION
The truth about treatment response
Most people with primary biliary cholangitis (PBC) are treated with an oral (by mouth) medicine called ursodiol (ursodeoxycholic acid, also known as UDCA). In addition to ursodiol, many people with PBC also take an add-on treatment.
Did You Know?
50%
Did You Know?
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
- Not lowering ALP levels quickly
- Worsening 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.
Have you heard there are new add-on treatment options available?
Make sure you are on a treatment plan that works for you.
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 Risk Assessment Checklist & 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 Risk Assessment Checklist & 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.
Did You Know?
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
Treatment plans to
be evaluated and
adjusted, if needed,
every 6-12 months
I realized life with PBC can get easier and I don’t need to relegate myself to accepting that nobody will ever fully understand my experience.
Amber, living with PBC
Does this sound like your experience with PBC?
A look into patient stories
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 itching.
This is Linda
Stopped treatment
2 years navigating PBC diagnosis
Treatment: None
Symptom: Persistent 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 because it caused a rash.
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 because it caused a rash.
This is Michael
Ursodiol only
22 years navigating PBC diagnosis
Treatment: Ursodiol
Symptom: Persistent 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.
Disease progression needs to be taken seriously as it can lead to severe liver problems.
If you want more from your PBC treatment, discuss options with your doctor to make sure you have the best plan for your needs.
Explore additional PBC resources to help you on your journey.
