PBC itch management
Itch, or pruritus, is a common symptom for up to 80% of people living with primary biliary cholangitis (PBC).
Continued discussion about the importance of PBC itch has led to the availability of some treatment options that help address it. It’s important to take steps to manage your itch where you can, and to discuss your experiences with your doctor.
IN THIS ARTICLE:
FACTS ABOUT ITCH
Up to 80% of people living with PBC experience itch
People with PBC itch say it feels like:
- Deep itch inside the body or under the skin
- Bugs crawling under the skin
- A burning sensation
I was experiencing symptoms like itching on the bottoms of my feet, my hands.
Jackeline Candelario, living with PBC
Person featured was compensated by Gilead.
Some experience it all over, while others feel it in specific areas such as:
- Hands and feet
- Scalp
- Back
- Legs
30% of those with itch say it is so bad, it impacts their daily lives
Itch can cause:
- Damage and scarring of the skin from scratching
- Difficulty sleeping, leading to fatigue
- Missing work, school, or social activities due to embarrassment or fear of judgment
People with PBC itch are about 2x more likely to also experience fatigue
If itch keeps you up at night, it makes sense that fatigue will follow. However, researchers have discovered there may be a scientific link between PBC itch and chronic fatigue. This means treatment strategies that help with itch could possibly help fatigue as well.
Compared to alkaline phosphatase (ALP), itch may not be top of mind for your doctor
That’s why it’s important to speak up about:
- When itch affects you most (for example, day or night)
- Any associated triggers or patterns you identify
- How frequently it happens
- How long episodes last
My fatigue and my itchiness were telling me something was wrong with my body.
Suzanne Anderson, living with PBC
Person featured was compensated by Gilead.
CAUSES AND TREATMENT OPTIONS
Itch is worth talking about. Ask your doctor about treatments that may help reduce itch.
Tips for talking to your doctor about your symptoms
These steps can help you discuss your symptoms in a clear, accurate, and timely way:
Step 1:
Note the frequency of your symptoms
Step 2:
Evaluate severity
Step 3:
Look for patterns
Step 4:
Tell your doctor
MANAGEMENT STRATEGIES
Do’s and don’t’s for PBC itch
While they might not take away all the itch, here are a few methods you can try that may help. You may need to ask your doctor for their recommendation or more information.
Shower, bathing, and personal care
- Use mild, nonalkaline soaps and oils
- Take baths or showers with lukewarm water
- Limit showers or baths to 20 minutes
- Do not bathe with hot water
- Avoid rubbing your skin after showering/bathing
Clothing
- Wear soft clothing made from natural materials like cotton
- Avoid tight clothes
- Avoid wool sweaters
- Do not use scented detergents
Ingredients to look for
- Use mild moisturizers that contain synthetic urea to help hold water and soften skin
- Try creams, salves, or lotions with cooling or anesthetic qualities with ingredients like menthol
- Avoid irritating herbs like chamomile or tea tree oil
Lifestyle
- Consider using ultraviolet (UV) phototherapy
- Reduce stress as much as possible
- Avoid consuming large amounts of hot or spicy food, hot drinks, or alcohol
Share strategies with others living with PBC.
The information provided is not meant to override your treatment plan or advice from your healthcare team.