Diagnosed With Primary Biliary Cholangitis (PBC)? Here’s What You Need to Know
Primary Biliary Cholangitis (PBC) is a chronic autoimmune condition that affects the bile ducts in your liver. When diagnosed with PBC, your immune system mistakenly targets these ducts, treating them as foreign invaders. Bile ducts are essential for transporting bile — a substance that helps digest fats and eliminate toxins — to your small intestine. A PBC diagnosis can disrupt this process and impact your overall health.
If you’ve recently been diagnosed with PBC, it’s normal to feel overwhelmed. To help you navigate this journey, we’ve gathered some important insights about living with PBC:
PBC Can Cause Liver Inflammation and Damage
When your immune system attacks your bile ducts, it triggers inflammation, which can damage your liver over time. It’s crucial to take steps to manage this inflammation and protect your liver from further harm.
PBC is a Progressive Disease
PBC is a progressive condition, meaning it gradually worsens. It does not go away on its own. It’s important to treat it early and slow down the progression. Doing so can help you have better health outcomes. As the inflammation continues, it can impair the function of your bile ducts, leading to bile buildup in your liver, which can significantly affect your liver’s ability to function.
The damage caused by PBC is permanent, so it’s important to keep up with your routine tests and monitor for signs of worsening symptoms or disease progression. Key symptoms to watch for include:
- Intense itching.
- Jaundice (yellowing of the skin and eyes due to bile buildup).
- Elevated levels of the liver enzyme alkaline phosphatase (ALP).
Risk factors that can put you at risk for progression include age at diagnosis, race, biomarker levels, and fibrosis stage. You have a higher risk for progression if you:
- Were diagnosed at younger than 45 years of age
- Have higher biomarker levels
- Have advanced fibrosis stage
PBC is most commonly seen in middle-aged women and those with a family history of the disease.
Treatment Options Are Available
Currently, there are no known cures for PBC. However, there are treatments available to help manage symptoms. Medications like ursodeoxycholic acid (UDCA), obeticholic acid (OCA), and elafibranor can help reduce inflammation and prevent bile buildup in the liver. These treatments aim to slow the progression of the disease. In rare cases, if the damage becomes too severe or a serious complication arises, a liver transplant may be necessary.
Your Health Care Team is Here to Support You
Your health care team will be a vital partner in managing PBC and slowing its progression. Regular check-ins with your doctors and getting a liver panel test done every three to six months are essential. You should have liver ultrasounds done every 12 to 24 months. If you notice any worsening symptoms, don’t hesitate to reach out to your health care team — they are your first line of defense. Everyone experiences things differently, so don’t overlook minor signs and symptoms. If something feels off, let your health care provider know.
How to Stay on Track
- Make sure you set reminders for yourself about routine tests and checkups.
- Schedule your appointments right away after each visit.
- Track your progress from your tests.
- Don’t be afraid to change your health care team if you feel they’re not a right fit for you.
Be open and communicate with your health care team to find the best treatment plan for you.