Despite being one of the most common symptoms of primary biliary cholangitis (PBC), itchy skin might come as a surprise. You may wonder how a disease that affects the liver would also cause your skin to be itchy.

Whether you’re experiencing itchiness now or preparing for what might come as your PBC progresses, there are several options for finding relief from itchiness. This article discusses everything you need to know about itching associated with PBC and four tips for managing this symptom. With the advice of your health care provider, you're likely to find a medication that can help you feel comfortable again.

How Common Is Itching With PBC?

Itching, also called pruritus, is one of the first symptoms to show up in people with PBC. However, itching can also be a symptom of many different conditions, so it’s not always a sign of PBC. Itching with PBC can happen anywhere, but it’s most common on the arms, legs, soles of the feet, and palms of the hands. Some people with PBC have described the feeling as bugs crawling on their skin.

One 2019 study from the United Kingdom found that 73.5 percent of people with PBC experienced itchy skin at some point during their disease. Of these people, 34.5 percent reported itching, and 11.7 percent considered their itching to be very severe.

More recently, a 2022 report found that about 81 percent of people with PBC experience itchy skin. Another 30 percent of people with PBC found the itchiness so uncomfortable that it affected their quality of life. Effects ranged from feelings of embarrassment about skin lesions to trouble falling asleep and fatigue.

Why Does Primary Biliary Cholangitis Cause Itching?

There’s no definitive explanation of why PBC causes itchiness, but scientists believe it may have to do with the bile ducts. These structures transport a fluid called bile, essential for breaking down fat during digestion. Without bile ducts, the acidic nature of bile would harm nearby organs and tissues.

Research suggests that damage to your bile ducts, like that from PBC, can cause bile to accumulate in the liver. Excess bile may then diffuse, circulate throughout the body, and affect organs like the skin. The presence of bile may set off a reaction that triggers itching in the skin.

Tips To Relieve Itchiness From PBC

Everyone’s skin is different. Itchiness from PBC may be uncomfortable for one person and downright unmanageable for another. If you’re currently on PBC treatment and continue to experience unbearable levels of itching, talk to your doctor. They may suggest adding a treatment to target itching specifically.

1. Try Antihistamines

The American Liver Foundation recommends that people with PBC try over-the-counter antihistamines like diphenhydramine (Benadryl) to help relieve itching. Antihistamines help calm itching by blocking histamine, an immune-response chemical that causes the itch response. They may also block the receptors of two immune proteins, interleukin 13 (IL-13) and IL-4, that can directly set off the need to scratch.

While oral antihistamines are recommended for people with PBC, the jury is still out on how effective they are for PBC-related itching. A 2023 review of antihistamine use for PBC published in the journal Digestive Diseases and Sciences suggested that antihistamines are not effective at addressing itching. However, the study authors acknowledged that the sedative effects of antihistamines may provide some type of relief.

2. Ask Your Doctor About Bile Acid Resins

Because a buildup of bile acids in the skin may contribute to itching with PBC, doctors may use medications called bile acid resins to treat PBC-associated itching. Bile acid resins may help address itching by reducing the levels of bile acids in your body and skin. While there are several bile acid resins available, the only one licensed to treat itching from PBC is cholestyramine.

Cholestyramine and other bile acid resins can affect the absorption of PBC medications like Ursodiol — also known as ursodeoxycholic acid or UDCA — so follow your doctor's instructions. Side effects include diarrhea, constipation, an unpleasant taste, and bloating.

3. Try Other Medications for PBC-Associated Itchiness

Opioid Antagonists

PBC-related itching may be related to changes in opioid activity in the brain. Research from the journal Hepatic Medicine: Evidence and Research has found that people with PBC have increased activation of opioid receptors involved in an itch pathway in the body.

Two opioid antagonists in particular, naloxone and naltrexone, have been studied for their effects on PBC-related itching. Two small studies found that naltrexone was effective at reducing itch in people with PBC. Naloxone has also been shown to help improve symptoms in people with PBC.

These treatments are effective, but the downside is that they may cause opioid withdrawal-like reactions, including high blood pressure, abdominal pain, and neuropsychiatric symptoms. Furthermore, people with long-term pain should be monitored when using these medications as they may worsen pain.

Rifampicin

Rifampicin, along with opioid antagonists, is considered a second-line therapy for PBC-associated itching, after bile acid resins. Rifampicin is an antibiotic that activates receptors and helps decrease the activation of itchiness in the body. There are some side effects, like gastrointestinal symptoms and darkened urine. Your doctor will monitor your liver enzymes to ensure that taking this treatment doesn’t harm your liver.

Selective Serotonin Reuptake Inhibitors

In the Hepatic Medicine study, the researchers found that serotonin pathways in the brain may contribute to the itching response in people with PBC. Sertraline hydrochloride (Zoloft), a drug typically used to treat depression, has been studied for potential effects on reducing itching in people with PBC. So far, two trials published in the American Journal of Medicine found that sertraline helped improve itching, but the study authors stated that more research on this topic is necessary. The drug does have minor side effects, including loose stools and insomnia.

4. Treat Your PBC

PBC is a rare autoimmune disease, and there’s currently no cure. However, managing your condition could help prevent symptoms, such as itchiness, from worsening.

UDCA is a common first treatment for PBC. When the bile ducts aren’t working, this medication helps move bile through the liver and into the small intestine. According to Mayo Clinic, people taking the drug have noticed an improvement in their liver function and less itching. Another medication that pairs well with UDCA is fibrates.

Researchers are still unsure how fibrates work, but some hypotheses are that they reduce the amount of bile acid in liver cells or help prevent inflammation in the liver. Fibrates have helped reduce liver inflammation and itching in people with PBC, but more information is needed about whether they’re worth using long term.

One treatment for PBC, obeticholic acid (Ocaliva), can actually make itching worse. This might not be an appropriate treatment for your PBC if your itching is severe.

Some experimental therapies help suppress the immune system to prevent further damage to the bile ducts, and other medications may help people who don’t respond to popular treatments. However, the safety and efficacy of these drugs — and whether they help itchiness — is still under investigation. If you would like to explore any of these treatments, contact your health care provider for a more personalized recommendation based on your medical needs.

Find Your Team

On myPBCteam, the social network for people with primary biliary cholangitis and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.

How would you rate your itching caused by PBC? How do you manage this symptom? Share your experience in the comments below, or start a conversation by posting on your Activities page.