Cholestatic pruritus is a common symptom of cholestatic liver disease. It’s marked by an ongoing, intense itch that can affect different parts of the body. For some, it stays mild. But for many, it grows into something far more severe, disrupting sleep, daily routines, and mental well-being. Studies show that more than 80% of people with cholestatic liver conditions, such as primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC), experience this form of itching.
Despite how widespread and distressing it is, cholestatic pruritus remains under-recognized and often untreated. And for those who live with it day after day, the search for relief can feel endless.
The Liver Foundation asked people with PBC what it means to live successfully with the condition, and these were some responses, verbatim:
“Living successfully with PBC. How does anyone do this? I am so new to this disease that it seems to me that there should be some education that comes along with the diagnosis. What does it mean to each of us? Prognosis? Will I need a transplant? The Doctors throw some medication at you without knowing how it will affect you and no explanation of the disease."
“What does living successfully with PBC mean to me? My husband has taken over all of my household duties so that I can just sleep all the time because my fatigue is so life-altering.”
If these responses are anything to go by, cholestatic pruritus isn’t just an itch. It’s a physical and emotional burden that deeply impacts quality of life. From chronic fatigue and dry skin to the mental toll of feeling unheard or misunderstood, many patients are left to navigate this condition with little support and even fewer treatment options. However, that’s changing slowly, thanks to the help of clinical trials.
Cholestasis occurs when bile can’t flow properly through the bile ducts into the small intestine. This backup can occur in diseases such as PBC and PSC. When bile builds up, it enters the bloodstream instead of reaching the gut where it belongs.
Bile contains substances like bile salts, cholesterol, and bilirubin. When these substances accumulate in the blood, they affect the liver and nervous system, triggering widespread, persistent itchy skin. That’s what we call cholestatic pruritus.
Scientists believe that substances in the blood during cholestasis, including lysophosphatidic acid (LPA) and autotaxin, interact with receptors in the nervous system, particularly in the spinal cord and brain. These signals tell the brain that the skin is itchy, even when there’s no visible rash or irritation.
However, some sources also suggest that the itch occurs because the immune system mistakenly attacks the liver’s bile ducts, resulting in inflammation, scarring, and, ultimately, liver damage. Over time, this disruption contributes to cholestasis, making the itch worse and increasing the risk of liver failure.
Many patients with liver disease also experience dry skin, which may intensify the itch. However, it’s essential to note that cholestatic pruritus is not just skin-deep—it originates from within the body. That’s why lotions alone often don’t work and why more targeted cholestatic pruritus treatment is needed.
Unlike normal itching, cholestatic pruritus often has no rash or visible cause. It can occur anywhere on the body, but it’s often worse on the hands, feet, arms, or back. For many, the itching is worse at night, causing significant sleep disruption. In the long run, the lack of rest can lead to mental health issues like anxiety, irritability, and depression.
And here's something that makes it even more difficult: the severity of itching doesn’t always match liver test results. Someone with only mildly elevated alkaline phosphate levels might experience extreme itching, while someone else with more advanced disease might not itch at all. This disconnect makes diagnosis and treatment tricky and adds to the emotional burden.
For many living with cholestatic pruritus, current treatments such as antihistamines, antidepressants, or bile acid sequestrants often bring side effects like fatigue, gastrointestinal upset, or limited effectiveness. These therapies typically provide only partial relief, leaving patients frustrated and still searching for answers.
That’s why new medications, especially IBAT inhibitors (Ileal Bile Acid Transporter inhibitors), are creating excitement in the medical community. IBAT inhibitors work by blocking the reabsorption of bile salts in the intestines, which reduces their buildup in the bloodstream—the very trigger for persistent itching. Since IBAT inhibitors target the root cause of the condition, they have the potential to provide more effective and long-term treatment for cholestatic pruritus with fewer adverse effects.
At Science 37, we recognize that traditional clinical trials can be burdensome for patients. Traveling to clinics, managing frequent visits, and disrupting daily life often discourage participation, especially for those already coping with chronic liver diseases like PSC and PBC.
Our decentralized trial model brings the study to the patient, wherever they live. Through secure telemedicine visits, home health professionals, and digital monitoring tools, participants can engage in cutting-edge research without leaving the comfort of their own homes. This approach not only reduces stress and travel but also allows for more diverse and inclusive participation, capturing real-world data that better reflects everyday experiences.
Science 37 is actively enrolling participants in remote clinical trials to check the safety and effectiveness of IBAT inhibitors and other targeted therapies for itching associated with PBC and PSC. The aim of these studies is to measure the effectiveness of these new treatments in reducing the severity of itching, improving sleep quality, and enhancing overall quality of life while carefully monitoring for any side effects. Patients with elevated alkaline phosphatase levels or those experiencing intense itching due to bile acid accumulation may be eligible to participate.
Every person who joins a clinical trial brings us one step closer to breakthroughs in treating cholestatic pruritus and preventing complications, such as liver failure. Your involvement helps researchers to understand how therapies work in diverse populations and informs regulatory approvals, ultimately making effective treatments more accessible.
Trial participants often report feeling empowered by contributing to science and connecting with a community facing similar challenges. Together, we can accelerate the development of safer, more effective solutions that bring real relief to those living with this relentless itch.
The future of PBC itching treatment is bright—and it starts with people like you.
If you or a loved one is living with primary biliary cholangitis or primary sclerosing cholangitis and struggling with persistent itching, consider joining a decentralized clinical trial today. Your participation can help transform lives—one itch at a time.
