No one understands primary biliary cholangitis (PBC) better than those living with it. That’s why we consulted Judith Carter, a myPBCteam member who’s been living with PBC since 2003, about her strategies for managing symptoms. This article presents her suggestions as well as medically backed tips for managing PBC symptoms.

The Importance of Managing PBC Symptoms

Since there’s no cure for primary biliary cholangitis — previously called primary biliary cirrhosis — it’s essential to learn how to manage the condition.

For many people, PBC progresses gradually, and symptoms may be mild or absent in the early stages. The most common symptoms of PBC are fatigue (extreme tiredness) and itchy skin. You may also experience dry mouth and eyes, jaundice (yellowing or discoloring of the skin), pain, swelling, and other symptoms in later stages.

“Living with PBC has taught me the importance of staying in the moment. … It has taught me to listen to my body and trust what it is telling me.”

— Judith Carter, myPBCteam member

“The symptom that affects me the most is fatigue. The window of energy I have each day has gotten shorter and shorter. I had to leave my teaching job because I couldn't last the whole day and be effective,” Judith said.

Tips for Managing PBC Symptoms

A good PBC hepatologist can guide you on the best treatment options to keep your condition under control. It is very important to see your hepatologist regularly so they can get you started on the best medication to help slow down PBC progression. Slowing the progression of PBC will help you avoid further disease complications, including cirrhosis (advanced scarring of the liver).

Here are some additional lifestyle 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.
• To reduce sodium on canned products, you can rinse them with water before eating them.
• Instead of using canned products, opt for fresher versions of foods, such as dry beans and fresh veggies, when possible.
• 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. When eating out, ask the waitstaff to put dressings and sauces on the side.

Getting into the habit of cooking more at home can save you a lot of sodium, money, and unhealthy ingredients.

2. Drink Water Throughout the Day

Staying hydrated is good for every part of the body and can help contribute to a healthy lifestyle when living with PBC. But it’s easy to forget to drink water when you’re busy with other activities. Fortunately, you can increase your water intake by making simple changes to your daily routine.

For instance, you can:

• 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 a cup next to your bathroom sink and drink some water whenever you stop by.
• Have a glass of water first thing in the morning to rehydrate after a long night’s sleep.

About 65 percent of people with PBC experience fatigue.

Judith discussed the issue of staying hydrated with PBC. “I wake up, and my mouth is a desert. I try to drink lots of water and use gum or hard candies to keep the saliva flowing,” she explained.

3. Exercise When You Can

Staying active is important for a healthy lifestyle when living with PBC symptoms like fatigue and joint and bone issues. Exercise can also help boost your mood and reduce stress. Osteoporosis (a condition that weakens the bones) is a possible complication of PBC, so staying active with weight-bearing exercises (like walking or bodyweight training) can help you maintain strong bones.

About 65 percent of those with PBC experience fatigue. As a result, you may not always have the energy for an intense workout.

Judith understands what it’s like to deal with symptoms like fatigue. “I often wake up with some energy, but it wanes around midafternoon. I feel heavy, like I’m in a force field, and I have to lie down and rest,” she said. “Fatigue doesn’t always mean sleepy. It can feel very uncomfortable, which can make sleeping difficult.”

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 Over-the-Counter Options for Itching

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

Always check with your doctor to ensure over-the-counter medications won’t interfere with any of your other treatments. If antihistamines don’t work, your doctor may suggest prescription medications instead. This was the case with Judith. “I had itching for years, but cholestyramine helped with it,” she said.

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. Judith has dealt with dry eyes. “I use drops for dry eyes in the morning and at night,” she said.

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 Healthcare Team

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

“I think I was lucky because I found other PBCers early on who shared their experiences. I tried to stay in the present and not catastrophize my situation.”

— Judith Carter, myPBCteam member

“With my local gastroenterologist, I was one of only two PBC patients they had seen in their career. It helped to talk with someone who had seen a lot of PBCers over time,” Judith said.

Treatments for PBC include medications to help preserve liver function. And newer medications are now available for PBC treatment. Your doctor may also prescribe medications to help manage specific symptoms.

Speak Up About Side Effects

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.

Seek Support From Specialists

If your primary healthcare 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 about 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 important for people with PBC, so you’ll want to maintain a network of qualified healthcare providers that may include a dentist, hepatologist (liver specialist), and dermatologist (skin specialist).

8. Get the Support You Need

Aside from medical care, social support through in-person or online support groups can 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.

Judith has turned to social support throughout her PBC journey, explaining, “I think I was lucky because I found other PBCers early on who shared their experiences. I tried to stay in the present and not catastrophize my situation,” she said. “Connecting with others helped, but their experience didn’t define mine.”

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.

In closing, Judith said, “Living with PBC has taught me the importance of staying in the moment. … It has taught me to listen to my body and trust what it is telling me.”

Join the Conversation

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

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 disease? Let others know in the comments below.