Answering Your Frequently Asked Questions About Living with PBC

Primary biliary cholangitis (PBC) is a rare liver disease. So, when you start searching for information, you might find that a lot of what you see out there is lacking, confusing or even flat-out wrong.

But you have questions about living with PBC. Questions about how to best care for yourself and what to expect.

We’re here for you.

We talked with hepatologist Muyiwa Awoniyi, MD, PhD, to get answers to frequently asked questions about PBC.

What’s the connection between PBC and vitamin D?

Fat-soluble vitamin deficiencies are common among people living with PBC. A major role of bile is to absorb fats, Dr. Awoniyi explains. So, disruption in this flow, such as when you have PBC, results in decreased absorption of these fat-soluble vitamins: 

• Vitamin A
• Vitamin E
• Vitamin D
• Vitamin K

Vitamin D deficiency is common in general and particularly in people living with PBC. Vitamin D is essential in bone metabolism. So, deficiency can increase your risk of osteoporosis.

Your healthcare provider can run tests to determine if you have a vitamin D deficiency (or other vitamin deficiency). They may recommend making certain changes to your diet to get more vitamins into your system. Or they might suggest taking supplements to help your body get the nutrients it needs.

Only take supplements as recommended by a healthcare provider. Taking too high a dose of fat-soluble vitamins can lead to toxicity, which can be harmful to your health.

Does alcohol use cause PBC?

Often, people equate liver disease with drinking alcohol in excess. This is a broad brush and doesn’t pertain to PBC.

Alcohol can contribute to steatotic (fatty) liver disease, but the disease pathway is very different from those involved in PBC. Both PBC and alcohol can lead to end-stage fibrosis or cirrhosis but shouldn’t be used synonymously.

“PBC can have some of the same biochemical findings associated with alcohol-related liver disease. But alcohol use isn’t related to developing PBC,” Dr. Awoniyi clarifies.

Primary biliary cholangitis is an autoimmune disease. It happens when your immune system attacks the lining of your intrahepatic bile ducts. The reason why your immune system mistakes these cells for invaders isn’t entirely known. But alcohol hasn’t been shown to trigger this overreaction.

That said, excessive alcohol use can cause further liver damage. So, people with PBC are advised against consuming alcohol in excess.

Does PBC cause hair loss?

Some people with PBC report that they experience hair loss during the course of their disease. There can be a couple of reasons for this.

For starters, damage to your liver from PBC and other conditions can affect the health of your hair.

Your hair relies on certain vitamins to stay strong and shiny. That includes vitamin A — one of those fat-soluble vitamins that your body may not absorb well when you’re living with PBC. So, a vitamin A deficiency can cause your hair to thin or fall out.

But take care not to go overboard on supplements to help combat hair loss. Extreme intake of vitamin A can make your hair loss worse. It may also lead to things like headaches, changes to your vision and muscle aches.

If you’re concerned about hair loss, talk with a healthcare provider to discuss your options.

Can PBC be misdiagnosed?

It can be troubling and deeply concerning to get a diagnosis of PBC. No one wants to have a life-threatening liver condition or face a potential transplant.

PBC can be difficult to recognize in its early stages. It’s a rare disease and often isn’t the first thing a healthcare provider suspects when you report symptoms like fatigue or brain fog — two of the most common early signs of PBC.

Your provider may first look for other conditions that explain your symptoms before they look for signs of PBC.

For most people, PBC can be found during a blood test to detect the presence of antimitochondrial antibody (AMA). AMA is a protein that’s often found in people with PBC.

But not everyone with PBC has a detectable level of AMA in their blood Between 5% and 10% of people with PBC test negative for AMA. If you test negative for AMA and your provider still suspects PBC, they’ll perform further lab tests. They may also do a liver biopsy. That means, they’ll take a small sample of tissue from your liver and analyze it.

How can I take care of myself?

There currently isn’t a cure for PBC. But there are still steps you and your healthcare team can take to help slow the progression of PBC and live your best life.

Medications can help lessen its effect on your life and slow the progress of the disease. A liver transplant may also be an option, depending on your stage of PBC.

The mainstay treatment is ursodeoxycholic acid (UDCA). It’s a bile salt that can help clear bile from your body and lessen damage to your liver. Newer medications — called PPAR agonists — may be available to people for whom other treatments aren’t effective.

PPAR agonists and other medications can also help to manage itching that’s often a symptom of PBC.

“Even a few years ago, we didn’t have many good answers for people living with itching and other, potentially debilitating effects of PBC. But these days, there are options. And they’re helping a lot of people,” Dr. Awoniyi reflects.

Medication can help slow the progress of PBC. But you may still need a liver transplant. But because PBC is an autoimmune condition, some people may develop it again even after a transplant. That’s why your provider may recommend continuing to take PBC medications even after a transplant.

“Between 17% and 30% of people who have PBC can have recurrence after transplant, but taking UDCA has been shown to decrease the risk,” Dr. Awoniyi shares.

In addition to medication, you can help keep yourself healthy while living with PBC by maintaining a healthy lifestyle:

• Follow a healthy, balanced diet.
• Don’t smoke or drink alcohol.
• Take medications only as directed by your healthcare provider.
• Exercise as you can, including walking and strength training to help preserve your bone health.

Living with PBC comes with questions. But there are answers. Be sure to follow your healthcare provider’s recommendations. And take care of yourself.