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PBC Symptoms
Three Steps to Improving PBC Symptoms  

Released: March 12, 2026

Aliya Gulamhusein
Aliya Gulamhusein, MD, MPH, FRCPC
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Key Takeaways
  • Assess PBC symptom burden at every patient visit, with a simple tool that can be used consistently over time.
  • Improvements in PBC disease activity do not always correlate with improvements in symptom burden.
  • PBC disease activity and symptom burden should be managed independently, but in parallel.

I believe there are 3 “do-this-tomorrow” changes that can meaningfully improve symptom care in primary biliary cholangitis (PBC).

1: Ask
First, I would advise asking patients about their symptoms at every visit, independent of their disease activity. This is far and away the easiest and most impactful change that you can make to your practice, if you do not already do so. Symptom burden does not always correlate with lab results, so it is essential to assess it directly and consistently. Patients may not volunteer this information without being asked, if this is what they consider their “normal.”

2: Be Objective
Second, I recommend being totally objective in how you go about monitoring and documenting symptoms. Employ a simple tool that you will be able to use consistently over time. I think the numeric rating scale is an excellent option, as it is very easy to use. It is a 1-to-10 scoring system that only takes 10 seconds to complete in the clinic and provides clear, objective data that you can follow longitudinally to track patients’ symptom trajectory.

If you feel that you have no time to ask it during the visit, have patients fill out a form at check-in, or ask medical assistants to bring it up with patients so that you have this information ready when you enter the room to start a visit.

3: Track
That brings us to the third change: Monitor symptoms over time and use that information to inform treatment decisions.

Because symptom monitoring is so easy to do, particularly for pruritus, monitoring changes over time is critical, whether that be at 3-, 6-, or 12-month intervals. Documentation is also important to include when submitting prior authorizations for second-line therapy, as it can make a difference in the willingness of payers to cover PPARs, for example.

But documentation alone is not enough; we need to act on that data and follow through with treatment adjustments. We should intervene when there is a significant change in objective measurements of symptom severity, or when patients deem it to be impacting their quality of life.

Disease Activity ≠ Symptom Activity
I think the most important myth to debunk is that improvement of PBC disease activity will always correlate with improved symptom burden. I want to emphasize that disease activity does not correlate with symptom burden. There are patients with normal liver tests who still have significant symptoms.

We are doing these patients a major disservice if we do not ask them about the severity of their symptoms and if we do not intervene on those symptoms. This is why it is so important that we now have drugs that can actually treat symptoms. At every visit, I think it is important to manage disease activity and symptom burden independently, but in parallel.

Putting Patients First
When thinking about treatment goals in PBC, balancing disease control and symptom management, I tell patients that I approach disease control and symptom management as 2 related, but separate, priorities. I ask about each separately, and I intervene on them separately.

I do not treat numbers, I treat people, and people aren't always manifestations of what their blood tests look like. Although it is important to control PBC to prevent progression to advanced liver disease, that is not the same as treating the symptoms the patient has today. Those symptoms directly impact patients’ quality of life. Thus, we have to evaluate and manage disease activity and symptom burden independently.

Ideally, we would be able to use agents like PPAR agonists to treat disease activity and symptom burden, particularly pruritus, with 1 drug. However, that's not always the case. Sometimes, different drugs are required to treat different aspects of PBC, such as in patients with normalized liver function but remaining pruritus, in whom PPAR agonists are not indicated based on available data. Linerixibat, an ileal bile acid transporter (IBAT) inhibitor, received FDA approved for adults with PBC and cholestatic pruritus in March 2026. Importantly, its use is not dependent on biochemical response, because pruritus may persist or occur regardless of biochemical control; treatment decisions should therefore be guided by symptom burden and patient quality of life, not liver biochemistry alone. The approval of linerixibat is an important step forward for the management of symptoms in PBC independent of disease activity or treatment response.

Ultimately, the goals and endpoints for disease control and symptom management are distinct. Both are critically important, but they require deliberate and individualized attention.

Your Thoughts
What challenges do you face when trying to balance controlling PBC disease and managing symptom burden? Leave a comment to join the discussion!

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