I just started keeping a notebook, and every time I go see the gastro…I take notes and I always ask her questions.
—Susan, living with PBC
The primary goal of treatment is to prevent progression
Not a real patient.
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Work with your healthcare team to determine your primary biliary cholangitis (PBC) treatment goals. One of the key goals of treatment is to prevent liver transplant or death.
To achieve this, it’s important to:
- bring levels of key liver biochemical markers (biomarkers) of liver health down to normal or near-normal and keep them there
- prevent the progression of "liver stiffness" (fibrosis)
We’ve created a glossary of common terms to help you understand more about this disease.
Make sure your treatment plan is right for you
- You and your healthcare provider should be tracking your overall liver health. This includes (but is not limited to) disease progression, biomarkers, fibrosis, and treatment response
- Remember, a range of biomarkers above normal levels and fibrosis progression may increase the risk for severe outcomes, like liver transplant or death
How often should I be getting my tests done?
Every
3-6 months
for biomarkers using
liver panel tests
Every 12-24 months for fibrosis using imaging tools, such as FibroScan® and MRI
Even if your levels don’t go up, there may be a risk
Starting treatment early is important because stable biomarker levels that are still high are not good enough. Keeping levels as close to normal has been shown to improve outcomes.
Once on treatment, you should stay on your treatment exactly as your healthcare provider prescribes even if:
- Your tests show improved liver health
- Your symptoms improve
5 tips for remembering to take your PBC medication
If you feel overwhelmed or sometimes just forget to take your medicine, you’re not alone. Here are some tips that may help.
You are your best advocate
Meet Bel. She was initially misdiagnosed and tried 27 different medications over 3 years, until she finally received a PBC diagnosis. But by then she required a liver transplant. She received her life-saving liver, but her recovery remains a challenge. Bel’s story is one of many whose race may have played a role in their late diagnosis and sub-optimal care.
Research suggests that people of color with PBC may have more serious disease when first diagnosed and experience worse outcomes.
Maintain an open line of communication with your healthcare provider to discuss recognizing signs and symptoms for early diagnosis and treatment of PBC.
You’re not alone in this journey
Get access to tools, resources, and other information, plus connect with other people living with PBC.
All participating parties, including patients, physicians, and experts, were compensated by Intercept Pharmaceuticals.