Questions to Ask & Things to Share With Your Healthcare Provider If You Have PBC
Finding information about a rare disease like Primary Biliary Cholangitis (PBC) can be challenging. You may be asking yourself: What is the most important information you should know about your new diagnosis? What symptoms are important for you to monitor and share with your doctor? This article will help you get the most out of appointments with your health care provider.
What is Primary Biliary Cholangitis?
Primary biliary cholangitis (PBC) is an autoimmune disease that targets the bile ducts in your liver. These ducts are important because they produce bile, which helps your small intestine digest fats and remove toxins from your body. In PBC, the immune system mistakenly attacks the bile ducts, causing inflammation in the liver. If left untreated, this inflammation can lead to liver failure.
What Should You Ask Your Healthcare Provider About PBC?
It’s helpful to go to your health care appointments with a list of questions. If you’re not sure where to start, here are some important ones to ask:
- Can liver damage caused by PBC be reversed or stopped?
- What treatments can help manage PBC?
- Are there any warning signs I should look for?
- How often should I get my liver function tested?
- How often should I check in with my health care team?
There’s no cure for PBC, but treatments like ursodeoxycholic acid (UDCA), obeticholic acid (OCA), and elafibranor can help reduce inflammation and prevent bile buildup in the liver. Your health care team will decide which treatments are best for you and what warning signs you should watch for. While most people with PBC see their health care provider every three to six months, your health care team will suggest a schedule that’s best for your needs.
What Things Should You Tell Your Healthcare Provider About?
To protect your liver, it’s important to catch inflammation early. Here are some symptoms to keep an eye on and let your health care provider know if you experience:
- Severe itching
- Yellowing of the eyes (jaundice)
- High levels of the liver enzyme alkaline phosphatase (ALP)
- Unusual fatigue or tiredness
- Abdominal pain or discomfort
Some factors can increase your risk of PBC getting worse. You may be at a higher risk if:
- You were diagnosed before age 45
- Your biomarkers are high
- You have advanced liver scarring (fibrosis)
In addition to symptoms and risk factors, certain lifestyle factors and medications can affect your PBC. Make sure to tell your health care provider if you start any new medications so that they can monitor any changes in your liver function. Changes in your alcohol use or smoking habits can also impact your liver health.
By monitoring symptoms and staying in close contact with your health care provider, you’ll be able to better manage your PBC. Early action helps prevent liver damage. Keep asking questions, stay informed, and manage PBC proactively.