Navigating life with primary biliary cholangitis (PBC) can be challenging, but there are strategies to help you thrive. Since there’s no cure for PBC — previously called primary biliary cirrhosis — it’s essential to learn how to manage the condition. Let’s explore ways to live well with PBC.

PBC may progress slowly and many people don’t have symptoms, especially in the early stages of the disease. The most common symptoms of PBC are fatigue and itchy skin. You may also experience dry mouth and eyes, jaundice (yellowing or discoloring of the skin and/or whites of the eyes), pain, and swelling.

A good PBC hepatologist can guide you on the best treatment options to keep your condition under control. In the meantime, here are some tips to stay healthy and feel your best when living with PBC.

1. Reduce Your Sodium Intake

Reducing the amount of salt in your diet may help prevent some of the swelling associated with PBC. There are different ways to consume less sodium, but it’s a change that will require some effort. You can start by being more selective at the grocery store.

Generally, processed foods and condiments are higher in sodium. Look for lower-sodium deli meats, salad dressings, and frozen or canned foods. When possible, swap out fresher versions of foods, such as dry beans and fresh veggies instead of canned products. Also, try using olive oil and vinegar or mashed avocado instead of premade ranch or Italian dressings.

Even if you’re careful, it can be tough to watch your sodium intake when eating in restaurants. Most restaurants use extra salt to preserve food and enhance flavor. Getting into the habit of cooking more at home can save you a lot of sodium, money, and unhealthy ingredients. When eating out, ask the waitstaff to put dressings and sauces on the side.

2. Drink Water Throughout the Day

Staying hydrated is good for every part of the body and can help ward off PBC symptoms like pruritus (itchy skin), swelling, and fatigue. But it’s easy to forget to drink water when you’re busy doing other things. Fortunately, you can increase your water intake by making simple changes to your daily routine.

For instance, make a habit of storing water bottles next to the door so you can grab one every time you head out for a drive. Keep an empty cup next to your bathroom sink and fill it up to drink whenever you stop by. It’s also a good idea to have a glass of water first thing in the morning to rehydrate after a long night’s sleep.

3. Exercise When You Can

Staying active is important for a healthy lifestyle and may help improve PBC symptoms like fatigue and joint and bone issues. It can also help boost your mood and reduce stress. Osteoporosis (weakening of bones) is one of the most common complications of PBC, so staying active with weight-bearing exercises (like walking or bodyweight training) can help you maintain strong bones.

About 65 percent of people with PBC experience fatigue. If you’re among them, you may not always have the energy for an intense workout. Although it can be tough to get moving when you’re tired, many people notice that exercise boosts energy levels and improves sleep quality.

Finding an exercise buddy and scheduling planned times to be active can provide the accountability to stay consistent with a new routine. Additionally, tracking your exercise on an app or calendar will help you see your progress over time and stay motivated.

4. Keep Chewing Gum Handy

When drinking water isn’t enough to stop your mouth from feeling dry, gum or hard candy can do the trick. Carry these items with you to increase saliva production. You can also ask your doctor about saliva substitutes or medication if the problem is interfering with eating or talking.

5. Try Antihistamines for Itching

Cleveland Clinic has found that more than half of people with PBC have some level of itchy skin ranging from mild to severe. There are several treatment options to help with itching, and it may take trying a few different strategies before you get a handle on this symptom. To start, over-the-counter antihistamines can be a good option, especially when the urge to scratch is preventing you from getting to sleep.

Always be sure to check with your doctor to ensure medications won’t interfere with any of your other treatments. If medications like diphenhydramine (Benadryl) don’t work, your doctor may suggest prescription drugs instead.

6. Use Eye Drops for Dry Eyes

Some people with PBC experience dry eyes. Using artificial tears or eye drops throughout the day can help relieve this symptom. If you normally wear contact lenses, talk to your eye doctor about brands better suited for dry eyes. You may find that switching to glasses is more comfortable when your eyes are especially dry.

7. Collaborate With Your Health Care Team

The symptoms of PBC can vary from person to person. Finding a health care provider who is well-informed about chronic liver disease and willing to listen during appointments can make all the difference in how you feel.

Treatments for PBC include medications to help preserve liver function, including:

• Ursodiol, also known as ursodeoxycholic acid (UDCA) and sold as Urso and Actigall
• Obeticholic acid (Ocaliva)
• Fibrates
• Corticosteroids

Your doctor may prescribe other medications to help manage specific symptoms, like cholestyramine, rifampicin, or naltrexone for itching.

Let your doctor know if you’re experiencing side effects or if you don’t think your current treatment plan is effective. Keeping a journal of your symptoms between visits can help you remember what you want to discuss. Your doctor can suggest additional treatments or lifestyle changes to improve your quality of life. They can also let you know about clinical trials that you may be eligible to participate in.

If your primary health care provider can’t offer solutions, they can also refer you to other specialists who can help. For example, a registered dietitian nutritionist can offer support and guidance with dietary changes, like adopting a low-sodium diet or getting enough calcium and fat-soluble vitamins (like vitamin D and vitamin A) to protect against PBC complications.

Regular dental visits, blood tests, and good skin care are also crucial for people with PBC, so you’ll want to maintain a network of qualified health care providers that may include a dentist, hepatologist, and dermatologist.

8. Get the Support You Need

Aside from medical care, social support through in-person or online support groups will help you feel less alone when living with a rare disease. It’s helpful to bounce ideas and suggestions off others, hear their stories, and find people to share your concerns and challenges. Your social network can also help you stay informed about new treatment options and resources that may be useful to you.

Being a source of support for others can give you a deeper sense of purpose and empowerment when living with an autoimmune disease. If your PBC progresses to cirrhosis or you need a liver transplant, it’s important to have a strong support system. You shouldn’t have to manage physical and emotional difficulties by yourself.

Talk With Others Who Understand

On myPBCteam, members come together to ask questions, give advice, and share their stories with others who understand life with primary biliary cholangitis.

What lifestyle changes have you used to improve your quality of life with PBC? Do you take any specific steps to help manage the side effects of liver damage? Share your experience in the comments below, or start a conversation by posting on your Activities page.