It's important for your doctor to explain which treatments are more curative and which may simply just help slow down the disease's progression. The first-line treatment for most people with PBC is a drug called ursodiol (Urso). It's a type of bile salt that helps to get rid of bile from your liver. It can help reduce liver damage and the risk of cirrhosis.

This is a very important question for PBC patients to ask, as some drugs, like Urso, may take up to nine months for you to see the full effect. You'll want to know what to look for to make sure the drug is working and also get a sense of a plan B if it doesn't.

The most common side effects of ursodiol are symptoms in your gut such as constipation, diarrhea or nausea, hair loss, and headaches. Another commonly used drug, obeticholic acid (Ocaliva), can increase itching and raise your cholesterol levels. Your doctor can let you know what to do if you notice any side effects.

The FDA has issued a drug safety communication warning of cases of serious liver injury from the use of Ocaliva by PBC patients without cirrhosis. Prescribing information also restricts use of this drug by people with cirrhosis.

There's not a one-size-fits-all diet for patients with PBC. But people with advanced liver disease may have nausea and lose their appetite, which can lead to weight loss. In general, it's recommended that people with PBC stay away from sodium and avoid highly processed, sugary foods, which are linked to fatty liver disease. Your doctor may be able to offer more specific dietary advice.

At some point, you may need to get a liver transplant. Have your doctor explain the role of a liver transplant, and be sure that you understand that it isn't always a complete cure. You'll want to know where the transplant will be done and if the facility does living donor transplants, which may mean that you can get it done faster.

Since PBC is an autoimmune disease, it can come back. As a result, many people stay on medications such as Urso after they have a transplant. They'll also need to take drugs to suppress their immune system for the rest of their life.

Your doctor will want to know if you're able to do activities of daily living. Are you able to go to work every day? When you get home, are you able to make dinner, or do you collapse on the couch in exhaustion? Everyone with PBC has symptoms, but they impact people's lives differently.

This includes any over-the-counter drugs you've used to manage symptoms like itching, such as antihistamines. Tell your doctor if you've tried any vitamins and supplements, too.

This is actually a fairly new question for doctors to ask, since people with PBC are now getting diagnosed earlier and earlier. If you're of reproductive age, your doctor should want to know about your pregnancy plans. If you do have kids, your doctor can suggest resources to explain to them what's going on.

Your doctor will want to know how you chart when you itch and when you're tired. If you feel wiped after you eat a big meal, for example, it may be due to what you ate and not your PBC. If your itching is worse in the spring or summer, there may be other things at play, like heat or allergies. They'll want as much information about your symptoms as possible to build a better picture.