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PBC Treatment Goals
Redefining PBC Treatment Goals: A Patient’s Perspective on When “Good Enough” Is Not Enough

Released: March 30, 2026

Pam Rivard
Pam Rivard, RN
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Key Takeaways
  • Escalation to second-line treatment should be proactive and patient centered.
  • HCP engagement, collaboration, and hope are essential to PBC care.

When I reflect on my treatment journey with primary biliary cholangitis (PBC), I realize that my understanding of treatment success has evolved. When I was diagnosed, success was simple: I do not want to die of this disease, and I do not want a liver transplant. That was the baseline.

When Stability Feels Like Success—At First
My first-line treatment of ursodeoxycholic acid (UDCA) was very simple, easy to use, and kept my liver labs stable. My alkaline phosphatase settled into the 200s, which my primary care provider called my “new normal,” and there was a sense that even if my liver was aggravated and under stress, as long as nothing was getting worse, then there was nothing to worry about.

But for me, treatment success is multifaceted. Yes, it still includes slowing disease progression and avoiding transplant. But it also means maintaining nutritional health and minimizing symptom burden—especially fatigue and itch

I was often told, “Your liver is not sick enough to give you problems.” So I had to take ownership of my health, supplementing fat-soluble vitamins and addressing nutritional gaps. When I did that, I felt tremendously better.

When First-line Therapy Falls Short
The challenge is that symptoms are not addressed, even with first-line UDCA. I was told from the beginning, “It is not going to address the fatigue, and it is not going to address the itching.”

And those symptoms are not minor.

The itching, in particular, is beyond real. It is right up there with the seriousness of liver failure in terms of impact on daily life. It is as distracting as a severe stabbing, relentless pain. It is so unnatural. It is like someone injects a drug into your body. It is torture.

Fatigue, similarly, is crippling and overwhelming. I have to plan my whole life around it.

For these symptoms, historically, there was “nothing next.” But today, that is no longer the case. In my case, when my ALP began to rise, I became a candidate for second-line therapy with a new PPAR agonist.

The introduction of these newer therapies has changed the landscape. When I eventually started a second-line option, one of the new PPAR agonists, I experienced not only biochemical improvement but also a profound change in symptoms, especially the itching.

The Role of Healthcare Professionals
I was not looking for a magic pill for any aspect of my PBC. But I did want my care team to listen to my goals. I also wanted my team to collaborate, to make sure that the specialist and primary care provider are on the same page. If someone has an allergist, they can collaborate as well. If you are a gastroenterologist, you may not know how to manage itch, but collaborating with or referring to an allergist might help, even if it’s just to rule out other causes of itch or to offer advice on managing itch.  

The most important point is to always have hope. I think 1 way to give people with PBC hope is by enrolling them in research studies. It is a great way to get good care, and I cannot recommend it enough. It is an option for people who are scared or do not know where to go. There is always hope.

Your Thoughts
To learn more about how a panel of experts decides when to move to second-line treatment, see the online tool that is part of this educational program. 

Then, join the conversation by leaving a comment below: How do you currently define treatment success in PBC, and at what point do you consider that first-line therapy is no longer enough?

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