PBC Awareness

05/27/2026

Newly diagnosed with PBC and already feeling exhausted? You’re not alone. This article explains that PBC-related fatigue starts in both your brain and your muscles. By identifying “energy thieves,” you can genuinely improve your quality of life. Talk to your doctor about treating underlying issues and adjusting medications, because fatigue doesn’t always match your liver test results, but it can be managed.



https://www.everydayhealth.com/liver-disease/what-causes-primary-biliary-cholangitis-fatigue/

05/26/2026

Sandra Watson was diagnosed at 39 with Primary Biliary Cholangitis (PBC). She faced fatigue, night sweats, jaundice, and the "dreaded itch" that no medication seemed to fix.

Then in 2016, Sandra joined a clinical trial for a new cell therapy – and it changed everything.

How it works (in plain terms): Doctors took immune cells from Sandra's own blood and transformed them into "cleanup cells" called macrophages. Think of them as tiny vacuum cleaners that gobble up damaged or infected cells in your liver. These trained cells were then re-injected back into her body.

The result: Ten years later, Sandra is still transplant-free. The terrible itch disappeared and hasn't come back. No more jaundice. Her liver tests have remained stable without worsening for 22 years since diagnosis and a full decade after just one round of treatment.

For anyone suffering with cholestatic itch (that relentless, sleep-ruining scratching), this therapy offers hope for long-term relief from a single treatment. Unlike daily pills, cell therapy could potentially "retrain" your immune system for years. While not yet widely available, successful trials like Sandra's pave the way for future FDA-approved options.

If you have PBC and standard medications aren't controlling your itch or disease progression, ask your hepatologist about emerging cell therapy trials. Sandra's 10 years of freedom could be yours one day.

New cell therapy has been a godsend for me, says liver disease sufferer - Sandra Watson suffers from primary biliary cholangitis which causes chronic itching and can lead to liver failure.

05/25/2026

Today, we pause to remember our fellow brothers and sisters who made the ultimate sacrifice for our country. Their lives will never be forgotten.

05/22/2026

Lorna, a 62-year-old grandmother from Slough, has Primary Biliary Cholangitis (PBC), an autoimmune liver disease where the body slowly attacks its own bile ducts. Left untreated, it can lead to irreversible scarring and even liver failure.

She tried the standard PBC medication (UDCA), but her blood tests kept getting worse. She was scared.

Then she joined a clinical trial for a new once-daily pill (name not yet released). For the first year, she didn't know if she was getting the real drug or a placebo. But her liver markers started improving anyway.

Now, after several years on the actual medication, Lorna's blood levels have changed so dramatically that doctors tell her she has a healthy liver.

"That worry has been taken away. I'm a different person. I don't give my condition a thought anymore."

How does this benefit PBC patients?

This real-life story proves that new treatments beyond UDCA are in the pipeline – and they work. For the 40–50% of PBC patients who don't respond fully to standard therapy, this offers genuine hope. A simple daily tablet could stop disease progression, prevent liver failure, and let you stop worrying about your liver.

If you're struggling with PBC, ask your hepatologist about clinical trial options. Lorna's story could be your story.

A Slough grandmother living with a condition that can cause liver failure has a new lease of life after a clinical trial has greatly improved her prospects.

05/21/2026

Source: https://liverdiseasenews.com/news/itching-drives-healthcare-costs-higher-pbc-patients-study-finds/

05/20/2026

Pruritus affects as many as 75% of PBC patients, and has been associated with sleep disturbances, fatigue, mental health issues, and reduced quality of life. However, “real-world evidence of its impact on healthcare resource utilization (HCRU) and costs remains limited..

The team, led by researchers at Gilead Sciences analyzed medical claims and laboratory data from adults with PBC from September 2017 to September 2023. The starting date (baseline) was a randomly selected medical event with or without a pruritus diagnosis after the initial PBC diagnosis. More than 52,000 PBC patients were identified: 10,077 with pruritus (19.4%) and 41,957 without.

PBC patients with itching have significantly higher healthcare resource use and medical costs, a study found.

05/20/2026

Imagine your immune system – designed to protect you – mistakenly attacking your own body. For people with autoimmune diseases like Primary Biliary Cholangitis (PBC) , that's exactly what happens.

A Colorado woman's story is making headlines today. Aimee Ward had systemic sclerosis (a rare autoimmune disease that hardens skin and joints). She joined a clinical trial for CAR-T cell therapy – a treatment that takes a patient's own immune cells, genetically re-engineers them to stop attacking healthy tissue, and puts them back in the body.

The result? Two years later, her symptoms have dramatically improved. She's not cured, but she's no longer "turning into a statue."

What does this mean for PBC patients?
CAR-T is being studied right now for multiple autoimmune conditions, including liver diseases like PBC. While not yet approved for PBC, early research shows it could potentially stop the immune attack on your bile ducts – addressing the root cause, not just managing symptoms.

How this benefits you:
If you're frustrated with daily medications that only partially control your PBC, CAR-T represents a future one-time treatment that could reset your immune system. Clinical trials for autoimmune liver disease are coming. Stories like Aimee's prove this isn't science fiction – it's science happening now.

Aimee Ward had no symptoms until 2022. She was eventually diagnosed with systemic sclerosis, a rare and progressive autoimmune disease.

05/20/2026

Big shout out to our newest top fans! 💎

Angela Muhamed-Eoff, Martha Luella Kraft, Jackie Holcombe Anthony, Jane Thomas

Drop a comment to welcome them to our community,

05/19/2026

If you have PBC, you know that severe itching (pruritus) can be just as miserable as any other symptom. It keeps you up at night, makes it hard to focus, and affects your quality of life.

New research that will be presented at the European Association for the Study of the Liver International Liver Congress on May 30, 2026, offers real hope.

A phase 2b clinical trial tested an investigational drug called Volixibat in adults with a liver disease similar to PBC. The results were striking: patients taking Volixibat felt significant itch relief within just 2 weeks of starting the medication. The study was large and well-designed, and it compared the drug against a placebo to ensure the results were real.

What this means for PBC patients: While this study focused on a related disease called PSC, the mechanism matters. Volixibat works by blocking a bile acid “recycler” in your gut – lowering bile acid levels that are known to cause itching in cholestatic liver diseases like PBC. Experts believe the same rapid relief could apply to PBC patients suffering from pruritus.

How this benefits you: If approved in the future, Volixibat could become the first rapid-acting prescription treatment specifically for cholestatic itch. For anyone who has tried antihistamines, creams, or off-label meds with little success – this represents a whole new approach, with results seen in weeks, not months.

Cholestatic pruritus in primary sclerosing cholangitis has been historically undertreated, in part because the symptom burden in PSC was not fully appreciate...

05/18/2026

May is Asian-American and Island Pacific Heritage Month. Today, we honor AAPI contributions in the medical field and specifically liver disease! Your work and support of the liver disease community are respected and appreciated!



https://liverfoundation.org/resource-center/blog/asian-americans-and-pacific-islanders-connection-to-liver-disease/

05/15/2026

May is National Mental Health Awareness Month!
Living with PBC—or caring for someone who does—is a marathon, not a sprint. Fatigue, itch, treatment uncertainties, and the emotional weight of a chronic liver disease can take a real toll on mental well-being.

This month, we see you. We honor the tough days, the invisible burdens, and the quiet strength it takes to keep showing up. Your mind matters as much as your liver health.

Here are 10 suggestions to help protect your mental health on this journey. Save this post. Share it with your PBC community. And remember: asking for help is a sign of courage, not weakness.

👇 Which of these has helped you most? Drop a 💜 in the comments.



10 Suggestions for PBC Patients & Caregivers to Protect Mental Health
For Patients:

1. Name the grief. Allow yourself to mourn the life or health you had before PBC. Honoring that loss (without judgment) can reduce emotional numbness and prevent burnout.

2. Separate “fatigue” from “laziness.” PBC fatigue is a biological symptom. Re-label unproductive days as “symptom management days” to release guilt and preserve self-worth.

3. Set a 5-minute “itch & vent” timer. When pruritus or frustration peaks, set a timer. During those 5 minutes, scratch (safely) and complain out loud. When the timer ends, shift to a grounding activity (cold water on wrists, deep breathing).

For Caregivers:

4. Track your own “caregiver load” weekly. Rate 1–10 on exhaustion, resentment, and isolation. If any score stays above 7 for two weeks, schedule a respite break—even 30 minutes alone.

5. Find one non-PBC identity anchor. Reclaim a hobby, role, or interest that has nothing to do with liver disease (e.g., “I’a gardener” not just “a caregiver”). Protect that identity weekly.

For Both Patients & Caregivers:

6. Use the “2-question check-in” daily. Ask each other (or yourself): What drained me today? What gave me even a tiny spark? No fixing, just naming.

7. Create a “no PBC talk” zone. Designate 1 hour or one meal per day where liver disease, appointments, and symptoms are off-limits. Talk about movies, memories, or silly things instead.

8. Build a “small win” ritual. Each evening, write down one tiny thing you completed (e.g., “drank water before meds,” “sent one kind text”). This rewires the brain away from helplessness.

9. Pre-plan “bad day scripts.” Write 2–3 short messages you can send to a friend when you’re too exhausted to explain PBC. Example: “Rough PBC day. Don’t need solutions, just a virtual hug.” Saves emotional energy.

10. Schedule a mental health checkup. Just like LFTs, schedule a one-time therapy or counseling session specifically to assess coping tools. Many liver centers offer social workers or psychiatrists familiar with chronic cholestasis.