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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A myPBCteam Member asked a question 💭
South Prairie, WA
June 23
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myPBCteam

High cholesterol is very common with PBC — it affects between 75% and 95% of people living with the condition, compared to only about 10% of the general population. So if you've been told your cholesterol is high, you're definitely not alone!

The reason it happens comes down to how PBC affects bile flow. When bile ducts Show Full Answer

High cholesterol is very common with PBC — it affects between 75% and 95% of people living with the condition, compared to only about 10% of the general population. So if you've been told your cholesterol is high, you're definitely not alone!

The reason it happens comes down to how PBC affects bile flow. When bile ducts are damaged, your body can't properly break down or remove cholesterol from food. On top of that, your liver may start producing more cholesterol to compensate, leading to a buildup in the blood. People with PBC can also have a unique type of cholesterol called lipoprotein X, which can throw off standard cholesterol test results. Because of this, doctors use a special blood test called ApoB-100 to get a more accurate picture of cholesterol levels in people with PBC. If treatment is needed, doctors often start with a moderate-intensity statin like atorvastatin or simvastatin. Research has been mostly reassuring — statins appear to be well-tolerated in PBC, with no significant worsening of liver function in studies. That said, people with more advanced liver disease or cirrhosis may need extra monitoring.

Common statin side effects can include:
- Headache
- Dizziness
- Fatigue or weakness
- Digestive issues

If statins aren't well-tolerated, a doctor may consider switching to a PCSK9 inhibitor instead. It's always worth having an open conversation with your doctor or specialist about your cholesterol levels and the best management approach for your specific situation. They can tailor treatment based on your overall health, liver function, and any other risk factors you may have.

June 23
A myPBCteam Member

That is a great question. I did talk to my Liver specialist, and it is common. There is actually a test that can be done to know if the high cholesterol is from PBC. He is having me tested for it with my next blood test. I really do not want to take a statin if I don't have to. I did have an issue with high triglycerides and heart doc wanted me to start on medications. I told her I wanted to try with correcting diet first. Started taking a fish oil supplement and diet change and it went down :)
Sometimes we have to be our own advocate

June 28

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