Dealing With Itchiness, Fatigue, Joint Pain, Jaundice, and Dry Eyes? Here’s How To Talk To Your Doctor About PBC

Raise your hand if you’ve ever experienced anxiety about talking to your doctor. OK, we’re seeing a lot of hands. 

No matter what symptoms you’re experiencing, it can be tough to feel confident bringing them up in an appointment, especially if you’ve felt disregarded in the past. 

That disregarded feeling is a familiar one for many people who suffer from autoimmune disorders, which are notoriously hard to diagnose. That includes those with primary biliary cholangitis (PBC), a chronic autoimmune liver disease that primarily affects women, often causing difficult symptoms that may be invisible to the people in their lives.¹

Read on to learn about this disease’s symptoms, causes, and prognosis — plus how to talk to your doctor if you’re living with it or think you might be.

What causes Primary Biliary Cholangitis? 

The exact cause of PBC is unknown but is thought to be caused by a genetic predisposition or environmental triggers.^2,3  In fact, PBC results from an immune attack on the small bile ducts in the liver. Bile acids leak into nearby liver tissues and damage liver cells, potentially triggering an immune response that causes even more damage to the liver.¹ 

What is it like to live with PBC?

In its early stages, PBC can cause fatigue and pruritus⁴ (hint: that’s medical speak for itching). And we aren’t talking about the kind of itch you feel from a mosquito bite — some PBC patients say it can feel like bugs under the skin. 

But PBC patients deal with more than just physical symptoms. Misunderstandings about PBC can create stigma among patients, which can negatively impact their quality of life — even though the disease isn’t linked to lifestyle choices or behaviors.⁵ While PBC is most commonly diagnosed in white women, research shows it also affects people of color and men. In the US, more and more women and Hispanic people are being hospitalized with PBC, and Black patients face a higher risk of dying from it while in the hospital.⁶

Is PBC treatable?

It sure is. Even better news: There are multiple treatments for PBC in the US. 

In some cases — like if patients start experiencing symptoms like jaundice or esophageal varices, which suggest the presence of advanced disease — a liver transplant might be the next step.⁷ That said, because of available treatments, there are fewer and fewer PBC patients who reach that point: liver transplants for PBC have gone down by nearly 40%, and in 2021, PBC made up just 2% of all liver transplants — the lowest it's been since records began in 1988.⁸

Liver health plays an important role in your overall health, and for PBC patients, certain lifestyle changes may help ease symptoms. Things like exercising (when you feel up to it) and following an anti-inflammatory diet can make a big difference.

How should PBC patients talk to their doctors?

Whether you’ve already been diagnosed with PBC or you think you may have it, it’s essential that you feel confident speaking to your doctor about your symptoms. Your healthcare provider needs to understand what you’re experiencing and how you’re feeling to help you find the right treatment. 

Here are some tips to make the most of your doctor’s visits…

• Write down what you want to cover beforehand. Remember that this isn’t a test; you don’t have to have anything memorized. Instead, make a list of questions and concerns you have, and refer to it when you’re in the doctor’s office. You can say something like: “I have a list I would like to read to you.”

• Don’t hold back. Has your fatigue felt slightly less manageable lately? Has your itching gotten worse at night? Share every detail with your doctor. To start the conversation, you can say: “These symptom changes are affecting me, so I want you to be aware of them in case they’re relevant.”

• Ask for clarification. If your doctor uses medical terms or acronyms you don’t understand, ask what they mean. Try something like: “You mentioned [term]. I don’t know what that means, can you explain it before we move on?”

• Leave with a plan. Make sure you end the appointment understanding what’s going on in your own body. You can do that by asking questions like “What does success with my current treatment look like?” and “How long should we wait to see if treatment is working?”

• Talk about more than medication. Your liver health is tied to your overall health. So don’t be shy about asking for advice about changes you can make in your day-to-day routine. Here’s a suggestion for opening that conversation: “I understand the treatment plan, but I’m also wondering about lifestyle. Do you recommend any dietary changes that might help? Is there an exercise style that might be better for me than what I’m doing now?”

theSkimm

Living with PBC can be difficult, but talking honestly to your healthcare provider is an essential part of getting the most effective treatment and learning to live with the condition. Put these tips into practice at your next appointment, and head here for even more information about PBC. 

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References:

1. American Liver Foundation. Primary biliary cholangitis (PBC). Accessed May 15, 2025. https://liverfoundation.org/liver-diseases/autoimmune-liver-diseases/primary-biliary-cholangitis-pbc/

2. National Institute of Diabetes and Digestive and Kidney Diseases. Symptoms & causes of primary biliary cholangitis (primary biliary cirrhosis). Accessed June 27, 2025. https://www.niddk.nih.gov/health-information/liver-disease/primary-biliary-cholangitis/symptoms-causes

3. Tanaka A, Ma X, Takahashi A, Vierling JM. Primary biliary cholangitis. The Lancet. 2024;404(10457):1052-1066. doi.org/10.1016/S0140-6736(24)01303-5 

4. Faisal A. Understanding fatigue and pruritus in primary biliary cholangitis. Clin Liver Dis (Hoboken). 2024;23(1):e0216. doi: 10.1097/CLD.0000000000000216

5. Sogolow ED, Lasker JN, Sharim RR, Weinrieb RM, Sass DA. Stigma and Liver Disease. Illness, Crisis & Loss. 2010;18(3): 229-255. doi.org/10.2190/IL.18.3.e 

6. Adejumo AC, Akhtar DH, Dennis BB, et al. Gender and racial differences in hospitalizations for primary biliary cholangitis in the USA. Dig Dis Sci. 2021;66(3):893–902. https://doi.org/10.1007/s10620-020-06402-3

7. Akamatsu N, Sugawara Y. Primary biliary cirrhosis and liver transplantation. Intractable Rare Dis Res. 2012;1(2):66‑80. doi:10.5582/irdr.2012.v1.2.66

8. Martin EF. Liver transplantation for primary biliary cholangitis. Clin Liver Dis. 2022;26(4):765-781. doi: 10.1016/j.cld.2022.06.014