What to Know About PBC, an Autoimmune Disease That Can Have No Symptoms

If the results show elevated liver enzymes, your doc should order follow-up tests to better understand if what’s going on has to do with your bile ducts. Then, it’s time for some imaging. “We do a small ultrasound to make sure there isn’t something blocking the bile, and if that’s not the case, you can measure an antibody in the blood that’s very specific to PBC called anti-mitochondrial antibodies, or AMA,” says Dr. Rabiee. AMA will show up in 95 percent of PBC cases. If you’re one of the five percent of people who don’t have that antibody, a liver biopsy or additional imaging tests can confirm your diagnosis.

While this process may sound seamless enough on paper, it can sometimes take five to eight years from the initial elevated liver test or itching to understand the root cause, says Dr. Mayo. “The symptoms are vague, and the liver test abnormalities may be attributed to something else by a physician, so it can take a convoluted route to finally getting the diagnosis.” This makes advocating for yourself all the more critical throughout the process. If you think something feels off or you don’t feel your symptoms are being taken seriously, speak up—and don’t be afraid to ask your doctor if they think PBC could be the cause.

PBC treatment involves some trial and error.

Because PBC is an autoimmune disease impacting your liver, you’ll need to take medication to slow its progression. Options your doctor may consider include:

Ursodiol/ursodeoxycholic acid (UDCA)

This tends to be the first kind of medication prescribed to folks with PBC. It doesn’t cure it (nothing can do that), but it can slow down damage to your liver. Unfortunately, it’s not a guarantee. “Not everybody responds to UDCA—about 30 to 35 percent of patients don’t,” says Dr. Rabiee. The other issue: It does nothing for the itching.

Obeticholic acid

If you don’t respond to UDCA, your doctor will likely suggest that you also take this medication. But it comes with a catch. “This also doesn’t help with itching and, in some cases, makes the itching worse,” says Dr. Rabiee.

Seladelpar and elafibranor

These are pretty new treatment options for PBC—the FDA approved them this year—and they can also be combined with UDCA. They can reduce inflammation, slow the production of new bile acid, and may also stop scar tissue from accumulating in the liver.

Cholestyramine

This is prescribed to help with the severe itching that can accompany PBC. “It flushes out the bile acids in the gut, but it can also flush out other medications,” says Dr. Rabiee. So, if you’re taking cholestyramine, you’ll need to space it out from the other drugs you’re taking for your PBC.

If it doesn’t work for you, your doctor may try something else for the itch, like rifampicin, an antihistamine, naltrexone, or even an antidepressant. “Which one works for whom is a matter of trial and error,” says Dr. Rabiee. “So give it a couple of weeks or months to see if you’re going in the right direction, then reassess. It usually takes more than one try.”

Lifestyle changes can help, too.

Medication is important, but don’t discount the power of following healthy habits. Here’s a breakdown of what experts say can help with PBC:

1. Exercise daily.

“None of the medicines improve fatigue, but one thing that’s been shown to help it is regular exercise,” says Dr. Mayo. “I tell patients to try to get some aerobic exercise in every day, even if it’s just walking around the block. It sounds a little counterintuitive, but when you’re fatigued, exercise can give you more energy in the long run.”

2. Limit your alcohol.

“More and more studies show that even an accepted amount of drinking can affect the liver long-term,” says Dr. Rabiee. That’s something you definitely want to avoid. Instead, mix up a mocktail or pick up some non-alcoholic canned options to get your fancy drink fix.

3. Eat a balanced diet.

People with PBC are at risk of having high cholesterol, so eating in a way that will help keep levels down is a good idea. “We recommend a Mediterranean diet to avoid fatty liver,” says Dr. Mayo. In practice, that means eating leafy greens, fresh fruit, legumes, nuts, fish, and chicken and avoiding too much red meat and processed foods.

4. Don’t skip recommended vaccines.

Any type of liver disease decreases your immune system’s ability to fight infection, Dr. Rabiee says. She recommends making sure you’re vaccinated against hepatitis A and B, and getting the flu and Covid vaccine every year.

Although PBC doesn’t have a cure, you can do plenty of things to slow its progression and minimize symptoms. It may just take some trial and error—and patience—to find what works best for you.

Get more of SELF’s great service journalism delivered right to your inbox—for free.

Related: