Starting a medication for primary biliary cholangitis (PBC) can bring a mix of hope, questions, and concern.

Seladelpar (Livdelzi) is approved by the U.S. Food and Drug Administration (FDA) for adults with PBC who haven’t had an adequate response to ursodeoxycholic acid (UDCA, also called ursodiol), or who can’t tolerate UDCA. It may be used with UDCA or by itself, depending on the person’s treatment history.

The FDA’s accelerated approval was based on a reduction in alkaline phosphatase (ALP), and studies have not yet shown that Livdelzi helps people live longer or prevents liver decompensation (worsening liver function that leads to serious complications).

Members of myPBCteam have shared what it’s like to take Livdelzi, including changes in ALP levels, symptoms that continued despite treatment, and challenges with side effects, cost, and insurance.

For more on Livdelzi, including how it works, side effects, and advice from other members, check out this treatment article.

Here are six questions myPBCteam members have raised about life on Livdelzi.

Livdelzi has been studied for its effect on ALP and other liver blood tests. In a 12-month study, 62 percent of people who took Livdelzi met the study’s blood test target, compared with 20 percent of people who took a placebo (an inactive treatment). By month 12, ALP was in the normal range for 25 percent of people who took Livdelzi, compared with 0 percent of people who took a placebo.

Some members reported substantial changes after starting Livdelzi. One shared, “In one month my ALP dropped from 232 to 143.”

Another said, “My liver enzymes went down dramatically and no side effects.”

What Members Are Saying

“In one month, my ALP dropped from 232 to 143.”

“My liver enzymes went down dramatically and no side effects.”

Others have had a different experience. One member explained, “I was tolerating Livdelzi very well. However, my numbers are not coming down at all.”

These stories show why it’s important to keep up with recommended lab tests. Your doctor can help you understand what changes in your own results mean.

There isn’t one timeline for how quickly a person’s lab results may change on Livdelzi. In the study, the Livdelzi group showed a larger average drop in ALP than the placebo group by one month, and average ALP remained lower through month 12, according to the prescribing information. Individual members may notice changes sooner or later.

One member said, “Seven days to good numbers.”

A member taking more than one PBC medication described their experience this way: “In October 2025, started Livdelzi plus [ursodiol], and my liver enzymes returned to normal within 30 days.”

These experiences don’t establish how quickly Livdelzi will work for someone else. Ask your doctor when they plan to check your labs and what changes they hope to see.

Pruritus (itching) is one of the most common symptoms of PBC, so it’s not surprising that members frequently ask whether treatment might help.

Among people who began the Livdelzi study with moderate to severe itching, those who took Livdelzi reported more improvement after six months than those who took a placebo. The prescribing information notes that this result came from a specific group in the study, so it doesn’t mean everyone will experience the same relief.

Some members reported improvement. “Itching is most on my mind. I am getting some relief finally with Livdelzi,” one member shared.

“Itching is most on my mind. I am getting some relief finally with Livdelzi.”

 

— A myPBCteam member

Another said, “No weight gain. Itching much better.”

Other members hadn’t experienced the relief they hoped for. One wrote, “I started taking Livdelzi … and so far, it’s not stopping my itching.”

If itching continues, becomes worse, or interferes with your daily life or sleep, let your healthcare team know.

One important theme among myPBCteam members is that better lab results don’t necessarily mean every PBC symptom will improve. Fatigue is one of the most common symptoms of PBC, and the blood tests used to evaluate a medication may not reflect how someone feels day to day.

One member captured that contrast clearly: “Eight months later, I have a normal ALP, very excited but my fatigue is still an issue.”

Another said, “My enzymes are now normal, and my only symptom is fatigue, which I’m learning to manage.”

“My enzymes are now normal, and my only symptom is fatigue, which I’m learning to manage.”

 

— A myPBCteam member

This distinction can be important when talking with your doctor about treatment. Lab results are one part of the picture, but how symptoms affect your everyday life is also worth discussing.

Members have discussed symptoms that appeared after they started Livdelzi. However, experiencing something after starting a drug doesn’t necessarily mean the drug caused it.

One member described, “By the third day, I had dizziness, loss of balance, and extreme fatigue.” They added, “I’m trying to determine if Livdelzi is causing these symptoms.”

Another member said, “I tried Livdelzi first, but it triggered my migraines, and I couldn’t take it.”

Experiences varied. Some members reported no new problems. One said, “I’ve been started on Livdelzi and have not had any side effects.”

In the study, the most common side effects were:

• Headache
• Abdominal pain
• Nausea
• Abdominal distension (swelling)
• Dizziness

The prescribing information also includes warnings about bone fractures, liver test abnormalities, and biliary obstruction (a blockage in the bile ducts). The FDA-approved label recommends liver tests before starting Livdelzi and during treatment and says to report concerning symptoms to your healthcare provider.

Tell your doctor about new, severe, or worsening symptoms after starting a medication. Your healthcare team can help determine what may be causing them and what to do next.

If you develop symptoms such as yellowing of the skin or eyes, swelling in the abdomen, right-sided abdominal pain, black, tarry, or bloody stools, coughing up or vomiting blood, or confusion, contact your healthcare provider promptly. These can be signs of worsening liver problems.

For some myPBCteam members, getting Livdelzi was as concerning as taking it.

One member reported, “My insurance informed me that the cost of this drug was $12,000 a month, but my copay was $20.00.”

Insurance approval itself can also be frustrating. One member said their insurer needed additional information from their doctor and summed up the experience this way: “It feels like I am going around in circles.”

What you pay can depend on your insurance, pharmacy coverage, and eligibility for assistance programs. The manufacturer lists financial support options for Livdelzi, but eligibility requirements apply, and program details can change.

If cost or insurance coverage is standing between you and a prescribed treatment, tell your healthcare team. They may be able to help you understand insurance requirements or point you toward available financial assistance resources.

Talk With Your Doctor About What’s Right for You

Ultimately, there isn’t one myPBCteam experience with Livdelzi. Some members described substantial changes in their labs or itching. Others saw little change, continued to experience fatigue, or wondered whether new symptoms might be related to treatment.

Those different experiences can help start a conversation — but your own medical history, symptoms, liver health, and treatment goals should guide decisions you make with your doctor.