Living with PBC: 5 Tips That Can Help
Looking back, Carol Roberts believes she experienced the fatigue associated with primary biliary cholangitis, or PBC, years before her diagnosis.
"I blamed Mr. Rogers for putting me to sleep at 4 o'clock every day when my kids watched it," she said. "Most likely now I owe him an apology because it probably was PBC."
By the time Carol received her diagnosis of the rare liver disease in 1999, she had already reached stage 4 – cirrhosis of the liver. At the time, she believed she would need a liver transplant, but 20 years later she's at that same stage and doing better than when she was first diagnosed.
Today, she's heavily involved with an organization she found when she was first diagnosed: PBCers. In addition to funding research, PBCers also offers educational resources and a supportive community of PBC patients who connect through Facebook and the website to share frustrations and advice.
"I always consider myself the person who listens to everyone's stories, and tries to convey them to other people, doctors, and pharmaceutical companies," said Carol. "I don't speak just for me. I'm going for the collective good."
We chatted with Carol about the advice she's gleaned from living with PBC for 20 years and talking with many fellow patients about how to live better with PBC symptoms after a diagnosis.
1. Consider that symptoms may not be caused by PBC.
PBC is typically discovered during routine blood tests. Because it's a rare disease without many well-known symptoms, it can take years for some patients to receive the correct diagnosis.
Fatigue and itchiness are two of the main symptoms of PBC. In order to find the best treatment options for these challenging symptoms, Roberts recommends first exploring whether something besides PBC may be causing them.
For example, she's found that from her own experience and from talking to patients, itch from PBC tends to feel different from itch caused by skin conditions.
"PBC itch is under your skin," Carol said, contrasting the sensation with itchiness from dry skin. "It's like a burning feeling. Scratching it doesn't help it. It makes it worse. It just crawls."
Carol said that sometimes, patients may hear that PBC causes itch and assume that their itchy skin is because of PBC, when it could be caused by other common skin conditions and irritations.
Fatigue, another common PBC symptom, can also have many different causes. For example, depression typically involves feelings of low energy and fatigue. Of course, simply not getting enough sleep can also lead to tiredness. Carol describes fatigue from PBC as the kind of feeling that doesn't go away after a good night's sleep.
In general, Carol recommends exploring other possibilities and talking with your doctor before concluding that something is caused by PBC – and therefore can't be helped.
2. When it comes to itch, understand your triggers.
For many with PBC, itchiness is the most frustrating symptom.
"My itch was so bad on the sides of my thighs that I looked like I had been in a car accident," said Carol.
If you find that lotions and creams aren't helping your itch, Carol recommends a few approaches that have helped her and others with PBC cope with itch. For Carol, she realized that heat was a significant trigger for itch, whether from a hot, sweaty day or a warm shower. To help, she started taking a cool bath with a dry skin treatment before bed. She lit a few candles, too, to make the whole experience more pleasant.
Others with PBC recommend using a soft brush to help, rather than scratching – Carol mentioned that scratching typically makes itch from PBC worse. If you do find that lotion helps, though, by all means use it, Roberts said. PBC is a highly individualized condition, and what works for each patient can vary widely.
3. Exercise can help fatigue from PBC.
Chronic fatigue is common in PBC, and like itch, researchers aren't sure why. Ursodiol, the standard treatment for PBC, doesn't improve PBC fatigue. Carol said that some patients she's spoken with have found that treatments like Provigil (Modafinil) can help, though because the treatment is not approved for PBC specifically, some insurance providers may not cover it. Other patients found that antidepressants helped with fatigue, as well.
Lifestyle changes can also make a difference, particularly exercise.
"Most people react to the term ‘exercise' thinking of the gym, or a workout," Carol said. "I always put it as, any increase in your activity beyond what you're doing right now is a step forward. It doesn't have to be a whole program. It can amount to taking a 10 minute walk a day, and as you feel better, you'll take more."
Carol said she personally gets most of her exercise from housework and getting out and running errands during the day, and has found that her fatigue has improved over the years.
4. Try new approaches one step at a time, especially if you're newly diagnosed.
When you're first diagnosed with a disease, particularly if it's rare, it's natural to start searching online for information about it. When it comes to PBC, Carol warns that much of the information may be out of date, or reflect individual experiences that don't speak for everyone.
"[Back when I was first diagnosed] when you went online and looked, it basically said that you had 5 to 10 years, and then you got a new liver and that was it," said Carol. "Unfortunately, that information is still out there."
When reading articles online about PBC, or any other condition, consider the source and the date the article was published to make sure the information is accurate and up to date.
You'll also find recommendations from other patients on certain dietary or other lifestyle changes that worked for them. If you're interested in changing your diet, Roberts recommends not making several changes all at once, which makes it difficult to understand what's helping you and what's not. There's no recommended diet for PBC, but patients often share adjustments they feel helped them.
"Don't eliminate everything at once," Carol suggested. "If you went on a medicine, and went gluten free, and did all these things, how do you know what worked?" She compared the process of trying new adjustments to feeding a baby – just try one change at a time.
5. Consider participating in research and education.
There's still a lot that researchers don't understand about PBC, including what causes it, why some people move through the stages of disease faster than others, why it causes itch and fatigue, and other questions. There are also limited treatment options. Some patients don't respond to the standard treatment, Ursodiol, and there are no treatments approved for itchiness or fatigue from PBC.
New treatments and discoveries need research volunteers to take part. Roberts hasn't been able to find a study she qualifies for in her area, but she often encourages others to participate and help move research forward.
"Some do and others teach," she said. "I can't participate but I sure can sure talk to everyone about it."
Interested in finding a PBC clinical trial near you? Start your search below.