Up to 89% of people living with PBC experience pruritus, which can occur at any stage of the disease.4,5,6*
Cholestatic pruritus is more than just an itch
Image is for illustrative purposes only and not of an actual patient.
Itch can be a life sentence of being uncomfortable.
—A real patient living with cholestatic pruritus in primary biliary cholangitis (PBC)
How do your patients with PBC describe their pruritus?
Feels like bugs crawling
It’s hard to escape that feeling. Like there’s bugs crawling all over you. It starts to mess with your head. You start to think of ways of escaping, but you can’t.
—A real patient living with cholestatic pruritus
In a study of 201 PBC patients with cholestatic pruritus, 35% of patients described their pruritus as “Bugs crawling”1
As if needles are pricking
At 10 o'clock at night, be ripping your skin apart because of the itching; it's just horrendous.
—A real patient living with cholestatic pruritus
In a study of 201 PBC patients with cholestatic pruritus, 15.2% described their itch as “Prickly/needles”1
A deep itch
You want to dig in to your skin to get whatever’s in there out. Because you know it’s not on top. You know that it’s inside, so you’re digging in.
—A real patient living with cholestatic pruritus
In a study of 201 PBC patients with cholestatic pruritus, 29.2% described their itch as “Deep and relentless”1
Burning
Sometimes you have like nerve pain burning… you just want to rip your skin off.
—A real patient living with cholestatic pruritus
In a study of 201 PBC patients with cholestatic pruritus, 17.6% described their itch as “Want to tear my skin off,” and 7.9% as “Burning”1
Are your patients with PBC struggling with pruritus?
Biochemical liver tests and stage of liver disease do not consistently correlate with the presence or severity of cholestatic pruritus.2,3
Percentages are approximate, as studies use varying definitions of mild, moderate, and severe pruritus.
In a survey of 633 patients with PBC, 42% reported itch was not discussed as a key PBC symptom at their most recent doctor’s visit7
*Studies reflect cholestatic pruritus reported in 73.5% to 89% of included patients.4,5
If I don't mention my itching, I never get asked about it.
—A real patient living with cholestatic pruritus
How does cholestatic pruritus impact your patients’ daily lives?
Image is for illustrative purposes only and not of an actual patient.
Severe pruritus is associated with fatigue and depression3,8
The severity of symptoms may vary from day to day and person to person, but the impact of pruritus on quality of life can be pervasive, impacting sleep, relationships, and daily activities.2,4
58% of patients with PBC and clinically significant itch reported cholestatic pruritus impacted their social lives4†
Nearly 3 out of 4 patients with PBC lose sleep due to pruritus1‡
† Clinically significant itch was defined as ≥7 points from a maximum of 15 on the itch domain of the PBC-40.4
‡ Itching is often worse at night in patients with PBC and leads to sleep interference in up to 74% of PBC patients with cholestatic pruritus.1
Itching is like a personal nightmare for me... I’m up all night, so I don’t get any sleep.
—A real patient living with cholestatic pruritus
Encourage your patients to speak up early and often about their itch
Image is for illustrative purposes only and not of an actual patient.
In a study, 321/2194 patients with PBC felt persistently embarrassed because of their scratching5
In a survey of 149 patients with cholestatic pruritus, ~70% reported that their doctor does not evaluate itch1
Start a conversation with your patients at their next visit
These questions can help:
- How often did you experience itching in the last four weeks?
- Did it disturb your sleep?
- Has the itching affected your home or work life? In what ways?
SEE How Lydia and Jorge are impacted by PBC and cholestatic pruritus
Video: Lydia and Jorge, Living with PBC
LYDIA: When my symptoms started with the PBC itch, it was random. Sometimes it would be my torso, my body, my legs, my arms. I didn't think nothing of it. But once I started hurting my body through my sleep, it was awakening for my husband and I. Okay, this is not normal.
JORGE: When the PBC itch started, I don't know what was going on. She’s got that urge to scratch and I had to really stop her because she don't want to stop it because she's asleep during the PBC itch and so, I gotta step in and soothe her down till she falls asleep again.
LYDIA: My career has been in education. At that point, I was doing 14-hour days at work and my health was deteriorating. The itching was horrible, I scratch when I'm asleep, so if I got three, four hours sleep, that was a lot. And I didn't realize how I was hurting myself by doing that. It was in the middle of the last semester of the school year when I had to stop.
JORGE: The role of the care partner is to be there for her. Not just whenever. Every day, 24-7, not just when you feel like it. So, you gotta listen to her needs. Luckily, we found a good doctor that really understood us and helped guide us through the process.
LYDIA: A good health care team looks like a medical team that makes you feel like a human being, they care. Doctors need to really, really question their patients. If they even mention itch, okay, how severe is it? When are you feeling it? What time of day is at its worse? When can you manage it? You know, to understand the body of what it’s telling you.
LYDIA: With this PBC itch, there's no heads up. There's no certain time that it’s gonna happen. It's been a tough journey, but now, I’ve accepted what I'm going through. I’m finally stepping up to the plate and to realize, okay, what can I do to make things better? Every day for patients like me, we have to take time to listen, take time to understand what our bodies are going through, and, to have faith.
READ THE PATIENT PERSPECTIVES NEWSLETTER
Learn about the impact of itch on patients with PBC
Screen for cholestatic pruritus at every visit
Use this brochure to help have a productive discussion with your patients about the impact of pruritus.
LEARN ABOUT A TREATMENT OPTION
FDA has approved a treatment for cholestatic pruritus in patients with PBC
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References
- Rishe E, Azarm A, Bergasa NV. Itch in primary biliary cirrhosis: a patients’ perspective. Acta Derm Venereol. 2008;88(1):34-37. doi:10.2340/00015555-0350
- Hegade VS, Bolier R, Oude Elferink RP, Beers U, Kendrick S, Jones DE. A systematic approach to the management of cholestatic pruritus in primary biliary cirrhosis. Frontline Gastroenterol. 2016;7(3):158-166. doi:10.1136/flgastro-2015-100618
- Düll MM, Kremer AE. Evaluation and management of pruritus in primary biliary cholangitis. Clin Liver Dis. 2022;26(4):727-745. doi:10.1016/j.cld.2022.06.009
- Mayo MJ, Carey E, Smith HT, et al. impact of pruritus on quality of life and current treatment patterns in patients with primary biliary cholangitis. Dig Dis Sci. 2023;68(3):995-1005. doi:10.1007/s10620-022-07581-x
- Hegade VS, Mells GF, Fisher H, et al. Pruritus is common and undertreated in patients with primary biliary cholangitis in the United Kingdom. Clin Gastroenterol Hepatol. 2019;17(7):1379-1387. doi:10.1016/j.cgh.2018.12.007
- Gungabissoon U, Smith HT, von Maltzahn R, et al. Pruritus in primary biliary cholangitis is under-recorded in patient medical records. BMJ Open Gastroenterol. 2024;11(1):e001287. doi:10.1136/bmjgast-2023-001287.
- Leighton J, Thain C, Mitchell-Thain R, Dyson JK, Jones DE. Patient ownership of primary biliary cholangitis long-term management. Frontline Gastroenterol. 2021;12(5):370-373. doi:10.1136/1Igastro-2019-101324
- Gungabissoon U, Gibbons DC, Requena G, Ribeiro de Souza A, Smith H. Disease burden of primary biliary cholangitis and associated pruritus based on a cross-sectional US claims analysis. BMJ Open Gastroenterol. 2022;9(1):e000857.
