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Most people with primary biliary cholangitis (PBC) enjoy a good quality of life — going to work, to school and socializing — for years after their diagnosis. However, PBC is a serious condition that requires medical treatments and a healthy lifestyle.
If you have PBC, here are a few ways to take care of yourself, alleviate symptoms and stay as healthy as possible. If you have questions about these recommendations, ask your healthcare team to discuss your specific needs.
Choose a healthy diet
Good nutrition is essential to help your liver work well. When you have PBC, focusing on a healthy diet is important.
You may be advised to:
- Avoid or limit drinking alcohol.
- Choose a diet full of fruits, vegetables and whole grains.
- Eat foods high in vitamin D and calcium.
- Avoid eating raw or undercooked shellfish, meat, fish and unpasteurized milk. Bacteria and viruses from raw foods sometimes lead to infections in people with liver disease.
- Maintain a healthy weight.
Ask your healthcare team to arrange a meeting with a dietitian if you have questions about your diet.
Take care of your overall health
When you have PBC, having a good relationship with your healthcare team is critical. Be sure to see your healthcare professional regularly — at least every 12 months. That way, your healthcare team can monitor your overall health and help you manage your PBC.
For example, you will likely be advised to:
- Find a healthcare professional who has expertise in PBC treatment.
- Take medicines as directed.
- Get vaccinations, especially against hepatitis A and B.
- Quit smoking.
- Keep moving with exercises such as walking for a half hour most days of the week.
- Do exercises with light hand weights to help increase your bone density.
Take PBC symptoms seriously
Talk to your healthcare professional if you have increased pain, itchiness, fatigue or other changes in your health. Some symptoms can lead to complications that need to be addressed.
Urgent complications
Contact your healthcare professional within 48 hours if you have:
- Yellowing of the skin and eyes, called jaundice.
- Abdominal pain.
- Itching that’s getting worse.
Call 911 or seek emergency medical care if:
- You are throwing up blood or have bloody, black or dark stools.
- You have unexplained confusion.
- Your abdomen or feet are gradually becoming more swollen.
Treating common complications
Some of the symptoms of PBC can be distracting or debilitating. Your healthcare team may be able to help manage your symptoms so that you can live a full life. For example:
- Itching. To manage itching, ask your healthcare team about drugs that may help with itching, including cholestyramine, diphenhydramine (Benadryl) and rifampin (Rifadin).
- Dry eyes and mouth. Artificial tears and saliva substitutes can help ease dry eyes and mouth. Sucking on hard candy or chewing gum can help relieve dry mouth.
- High cholesterol. You may be prescribed a medicine, such as a statin, to help lower your cholesterol levels.
- Blood pressure. If you have high blood pressure in the blood vessels around the liver, a medicine called a nonselective beta blocker can be helpful.
- Bone loss or weakness. If you have osteoporosis, you may be prescribed supplements such as vitamin D and calcium.
- Vitamin and mineral absorption. With PBC, you may not absorb enough of the vitamins or other nutrients that your body needs. Vitamin supplements can provide the vitamins your body is missing. People with PBC often take vitamins A, D, E and K and other supplements such as folic acid, iron or calcium.
The mental health burden of PBC
Dealing with a chronic disease like PBC can be draining. The stress of potential complications, the medicine regimen and regular appointments can take a toll. In one study of patients with PBC, it was found that:
- Sixty percent of respondents were unhappy with their current lifestyle, behaviors and goals as they had to be modified to accommodate their symptoms.
- Fifty percent of patients reported high levels of self-perceived stress and anxiety, described as “lassitude,” “chronic fatigue” or simply “exhaustion.”
- Forty five percent of respondents said they had to decrease their social interactions with family and friends to accommodate their symptoms, primarily fatigue and pain.
If you have PBC and are struggling with mental health, you have options. Consider doubling the effort to manage PBC and its symptoms optimally with help from your healthcare team. Talk to a mental health professional. Or try stress management techniques such as yoga, meditation or other relaxation exercises.
Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission.
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