If you’ve been navigating life with primary biliary cholangitis (PBC), formerly known as primary biliary cirrhosis, you know it can be tough to manage your symptoms. One issue you might face with PBC is high cholesterol.

At myPBCteam, we’re here to help. We’ll explain how PBC and cholesterol are connected and what you can do about it.

What Is High Cholesterol?

Cholesterol is a fat (lipid) carried through your blood via proteins. Together, cholesterol and its proteins are called lipoproteins. You need small amounts of cholesterol to help build cells and make hormones and vitamin D.

Too much cholesterol can cause atherosclerosis, a condition where plaque builds up inside your blood vessels. Over time, this buildup can narrow or block the arteries, increasing your risk of heart attack and stroke. These changes are part of what’s known as cardiovascular disease.

You may have heard of “good” and “bad” cholesterol. Low-density lipoprotein (LDL) is often called “bad” cholesterol because it can stick to the artery walls and form plaques. High-density lipoprotein (HDL) is considered “good” because it carries extra cholesterol to the liver, where it can be removed from the body.

People with PBC may also have a unique form of cholesterol called lipoprotein X, which can interfere with standard cholesterol test results and doesn’t behave like typical LDL or HDL.

You may be wondering what this has to do with PBC. Keep reading to find out how the two are related.

How Are High Cholesterol and PBC Connected?

People with PBC are more likely to have high cholesterol. This condition — known as hypercholesterolemia or hyperlipidemia — affects 75 percent to 95 percent of people with PBC. In comparison, only about 10 percent of U.S. adults have high cholesterol.

The reason high cholesterol happens in PBC is complex. As PBC progresses, bile ducts can become damaged or blocked, reducing the flow of bile through the liver — a condition called cholestasis. Bile plays an important role in helping your body digest fats and absorb cholesterol from food. When bile can’t flow properly, your body can’t break down or remove all the cholesterol you eat.

At the same time, your liver adjusts how much cholesterol it makes based on how much is absorbed. When your body isn’t absorbing cholesterol normally — as in PBC — your liver may think there isn’t enough and respond by producing more. This process is called intrahepatic cholesterol synthesis.

In PBC, the body removes less cholesterol and makes more. That combination can lead to too much cholesterol in the blood, which may increase the risk of cardiovascular disease over time.

How Do Doctors Test for High Cholesterol?

You might be wondering if you can tell whether you have high cholesterol based on how you feel. However, there are no symptoms of high cholesterol. You’ll most likely find out you have high cholesterol through a standard blood test. Most people are screened for cholesterol every few years, regardless of whether they have PBC.

If you have PBC, your doctor will want to do a special type of cholesterol blood test called ApoB-100. This test is more specific for people with PBC than the standard cholesterol tests because it accounts for lipoprotein X. If your ApoB-100 concentrations are low and you have no cardiovascular risk factors — like diabetes, high blood pressure (hypertension), or tobacco use — the doctor will likely follow up every five years or so.

Your doctors will be more careful if you have other risk factors for cardiovascular disease. Lower ApoB-100 numbers will worry them. If you have good cholesterol levels but risk factors, they’ll want to recheck you every year. If your doctors find your cholesterol is high, they’ll probably want to start treatment to lower those levels right away.

Sometimes, high cholesterol is only discovered after someone already has heart disease. One myPBCteam member reported, “Coronary artery disease was discovered by accident after a scan.”

The good news is that high cholesterol is treatable.

How Can High Cholesterol Be Managed?

Your doctor will most likely start you on a moderate-intensity statin like atorvastatin or simvastatin. Statins work by blocking a material that makes cholesterol. You’ll take your statin as a pill every day. After a few months, your doctor will check your ApoB-100 levels. If the cholesterol levels haven’t gone down enough, they may increase your dose.

If after a few more months, there still isn’t an improvement in your cholesterol levels, you may be prescribed an additional drug. PCSK9 inhibitors are a newer type of cholesterol drug that helps your liver clear the bad cholesterol from your blood. You’ll likely get an injection of PCSK9 inhibitor at your doctor’s office every few months.

The PBC treatment you’re already taking may also help lower your cholesterol. Ursodiol (also called ursodeoxycholic acid , or UDCA) is a bile acid that helps your liver move bile. UDCA treats cholestasis, the underlying cause of high cholesterol, so your total cholesterol levels go down.

Fenofibrate is another PBC treatment that helps lower cholesterol. However, researchers aren’t sure that fibrates protect you against heart disease.

A healthy lifestyle is a key part of managing your risk of cardiovascular disease. Make sure you eat healthy foods, exercise regularly, and get plenty of sleep. These healthy habits should go along with the cholesterol-lowering medications you take.

On myPBCteam, members discuss what treatments work for them. One member wrote, “I myself take a statin. A lot of people with PBC are also dealing with high cholesterol as part of it, and it’s important to treat that so you don’t end up with heart problems.”

Are Cholesterol-Lowering Medications Safe for People With PBC?

Many medications are processed in the liver. Researchers have wondered whether statins and other medications may be toxic for people with PBC whose livers are already damaged. Although research is still limited, studies so far have shown that statins are safe in people with PBC. PCSK9 inhibitors seem to be safe in people with moderate liver disease. Your doctors will help you understand your risk and closely track your hepatic (liver) health.

One myPBCteam member points out the importance of collaboration between your doctors: “Are your general practitioner and your hepatologist talking together? I would definitely check any new medication or supplement with your hepatologist. I just feel that they’re the ones that would know the answer the best.”

What Are the Side Effects of Cholesterol Medications?

Common side effects of statins include:

• Headache
• Dizziness
• Tiredness or physical weakness
• Digestion problems

But every person tolerates statins differently. Talk to your doctor if your side effects affect your daily life. They may change your dose or switch you to a PCSK9 inhibitor.

If you’re taking a PCSK9 inhibitor, you may feel fatigue and muscle soreness. As with most shots, the site of your injection might be sore or swollen, too. UDCA has few side effects, but you may gain weight, have diarrhea, or lose hair.

Preventing and treating high cholesterol is an important consideration for people with PBC. Your doctor can help you understand why you have high cholesterol and find the best way to manage it. It might take some trial and error, but once you find a strategy that works for you, your overall health will improve.

Talk With Others Who Understand

On myPBCteam, people share their experiences with PBC, get advice, and find support from others who understand.

Have you been diagnosed with high cholesterol? Let others know in the comments below.