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A myPBCteam Member asked a question 💭

Hello, I would like you to give me advice on how to deal with the itching, it's horrible, I have a lot of episodes, I feel tired right now, this is affecting my life a lot😭

September 19
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A myPBCteam Member

Hey @A myPBCteam Member just found this article in Resources (my head is still a little buried in the sand), “What causes PBC?”
Answer: Genetics – About 70 genes have been linked to PBC. Having a parent or sibling with PBC raises your risk significantly.
I am surprised! 70 genes!!!!! I always said it had to be hereditary because both mom and I have it.
Theres other causes as well but 70 genes blew me away!!!!
Heres some research- may be the seminal article!?

https://pmc.ncbi.nlm.nih.gov/articles/PMC9957238/

Vickie

The Genetics of Primary Biliary Cholangitis: A GWAS and Post-GWAS Update
The Genetics of Primary Biliary Cholangitis: A GWAS and Post-GWAS Update
September 20 (edited)
A myPBCteam Member

@A myPBCteam Member thanks for this, I think one of the specialists on a PBC Foundation Q and A mentioned that high number of genes recently. Likewise I was surprised at the high number!

September 20 (edited)
A myPBCteam Member

I know that Sertraline (Zoloft) is meant to help relieve itch somewhat although not the original purpose of that antidepressant drug.

I also was recently informed at a PBC patient conference that one of the new second line therapies - Seladelpar (Livdelzi) also seems to alieviate itch somewhat.

September 19 (edited)
myPBCteam

Managing severe itching and fatigue with PBC can feel overwhelming, but there are real strategies that can help. Here's a breakdown of what's known to work:

For Itching:

- Bile acid resins (like cholestyramine) are the first-line treatment — they bind bile acids in the gut so they leave the body. If you take ursodiol, space Show Full Answer

Managing severe itching and fatigue with PBC can feel overwhelming, but there are real strategies that can help. Here's a breakdown of what's known to work:

For Itching:

- Bile acid resins (like cholestyramine) are the first-line treatment — they bind bile acids in the gut so they leave the body. If you take ursodiol, space it 1–4 hours apart from cholestyramine to avoid absorption issues
- Antihistamines won't stop the itch itself, but their drowsy side effect can help you sleep through it at night
- Opioid antagonists like naltrexone have shown some benefit in studies, though they can cause withdrawal-like side effects
- SSRIs like sertraline have been studied for PBC-related itch with promising results in small trials
- New treatments like linerixibat (an IBAT inhibitor) are currently under FDA review, with a decision expected in 2026

Practical day-to-day tips from a myPBCteam member include skipping socks and shoes on bad itch days, and using ice or acupressure on affected areas — especially the feet. For Fatigue:

Fatigue in PBC is real and can be severe — about 1 in 5 people experience it at a level that seriously affects daily life. It doesn't always improve with PBC treatment alone.

Some approaches that may help include:

- Regular exercise — it sounds counterintuitive, but movement can genuinely boost energy levels and improve sleep quality
- Pacing yourself — listening to your body and planning activities around your energy peaks (many people feel better in the morning)
- Healthy nutrition — PBC can affect absorption of fat-soluble vitamins (A, D, E, K), so ask your doctor about checking for deficiencies
- Sleep hygiene — reducing screen time before bed and addressing any sleep disruptions
- Medication review — some medications can worsen fatigue; your doctor may be able to adjust timing or dosage

A myPBCteam member described fatigue as feeling "heavy, like being in a force field" — and noted that fatigue doesn't always mean sleepy, which can make it even harder to manage.

It's always worth looping in your healthcare team, as blood tests can uncover underlying factors like nutrient deficiencies or hormone imbalances that may be making things worse.

September 19

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