My PBC Treatment Journey (VIDEO)

Updated on February 26, 2024

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00:00:00:00 - 00:00:26:13
Cecilia
My name is Cecilia. Right now, I’m actually in the middle of switching treatment. We looked at all the data points and my current labs and realized that I’m not responding to my current treatment the way that we hoped I would. It’s been a constant evaluation on if the medication is working and the cost benefit of adding another medication.

00:00:26:15 - 00:00:52:10
Cecilia
I would recommend other patients to really monitor their own labs. There are plenty of apps out there. There are lots of PBC groups who put forth apps where you can monitor your labs, or even just write them down in a notebook. That’s how I started, and highlighting them and looking for trends, looking for decreases, increases. From there, really talk to their hepatologist about what it is that other patients are on.

00:00:52:12 - 00:01:13:03
Cecilia
One of the biggest factors for me in finding a specialist that I felt was a good fit for me was that my hepatologist had to be someone who listened to me, who trusted that I knew my body, and trusted that I knew what symptoms were normal for me, and what symptoms were not normal for me. I wanted to be included in conversations.

00:01:13:05 - 00:01:41:20
Cecilia
He knows that he can pose things to me and say, like, “Look. I know ultimately, you know, we’re going to decide together, but I want to hear what you think, or what would you feel comfortable doing?” He’s also incredibly responsive via email, but also via text, and that’s really important for me. I want someone who’s cutting edge. I want someone who pays attention to the research, but also someone who engages with patients and the community.

00:01:41:22 - 00:01:50:03
Cecilia
My name is Cecilia, and I’m a member of myPBCteam.

Switching or adding treatments is a reality for many people living with primary biliary cholangitis (PBC). In this video, Cecilia Dueñas talks about approaching a change in treatment when her current PBC treatment stopped working.

Treating PBC

PBC is a chronic disease that needs to be treated to slow its progression and prevent severe liver damage. Your hepatologist (liver specialist) may suggest several medications to treat PBC and address inflammation in your liver. Another component of treating PBC is managing your symptoms, like fatigue and itching. Like most medications, PBC treatments can cause side effects. PBC treatments can also be more or less effective depending on factors like your medical history and other health conditions you may have.

Changing Your PBC Treatment Plan

When determining a PBC treatment plan, your doctor will work with you to figure out if your current treatment is working or if you need to try something different. Your doctor will keep track of your labs and other test results to see if your PBC is progressing.

In addition to working with her team, Cecilia finds it helpful to monitor and track her PBC symptoms and lab results at home. This can be done with a pen and paper or a PBC digital app. You can also ask your doctor for recommendations on monitoring and managing your symptoms at home.

If your PBC treatment is causing side effects, talk to your doctor about them. Your doctor might suggest you stay on that medication to treat your PBC and start another medication to help manage your side effects. They might also suggest changing your PBC treatment plan, if that’s an option for you.

Cecilia highlights the importance of having a trusting relationship with your PBC specialist. You should be able to have an honest conversation with them about your PBC symptoms — what’s normal and what’s abnormal — and about next steps if your current treatment isn’t working well enough for you.

Talk With Others Who Understand

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

Have you had to change or add treatments for your PBC? What helped you through that process? Share your experience in the comments below, or start a conversation by posting on your Activities page.

More Videos

Cecilia talks about her life with PBC and how she made adjustments to manage her disease without sacrificing the daily activities she loves.

Watch Video

After a disappointing encounter with a hepatologist, Cecilia decided to research specialists to find one who would fit her needs. She focused on hepatologists who specialized in PBC and had experience treating an ethnically diverse population.

Watch Video

Elizabeth Wartella, M.P.H. is an Editor at MyHealthTeam. She holds a Master's in Public Health from Columbia University and is passionate about spreading accurate, evidence-based health information. Learn more about her here.