PBC Patient Resource Accompanies PBC Case Closed activity: https://www.mycme.com/courses/improving-treatment-for-patients-with-primary-biliary-cholangitis-8951

1. I've been diagnosed with primary biliary cholangitis (PBC)
PBC is a rare, autoimmune disease where your
body attacks your own bile ducts in the liver. It is
a progressive, chronic disease meaning that it
can get worse and will not go away over time.
What is PBC? PBC is NOT:
Caused by drinking alcohol
Contagious
Potential Causes
Cause unknown
May be genetic
Exposure to cigarette smoke or
certain chemicals may play a role
Symptoms of PBC
Tired/Fatigue
Itching/Pruritus - Can happen anywhere on
body and be worse at night - Treat with OTC
antihistamines, prescription rifampicin,
naltrexone, cholestyramine, or sertraline
Dry eyes - Treat with eye drops/artificial tears
Dry mouth - Treat with hard candy/chewing
gum, saliva substitutes and medications
Trouble remembering/concentrating
Most Common
Other
Your doctor will ask you:
About your symptoms
History of certain autoimmune
diseases
If someone in your family has been
diagnosed with PBC
If you have a history of infections or
exposure to certain chemicals
During the exam, the doctor will:
Use a stethoscope to listen to sounds
in your abdomen
Tap/press on your abdomen to check
for tenderness or pain
Check if your liver and spleen are
larger than normal
Look for yellowing of the skin and
whites of your eyes
Your doctor may also perform a liver
biopsy to rule out other diseases,
confirm PBC diagnosis, or determine if
PBC is advanced
Questions to ask your doctor:
How severe is the liver damage?
What treatment do you recommend?
Will the treatment slow down the
progression of PBC?
Will any medication be prescribed?
Should I change my diet?
Are there any supplements I should take?
What can be done to manage my
symptoms?
If cirrhosis develops, is a liver transplant my
only option?
Treatment Options
While there is no cure of PBC, there are several treatments available
Side effects - Call Doctor if these are severe
Dizziness
Headache
Cough
Fever
Sore throat
Runny nose
Frequent/painful urination
Muscle pain
Hair loss
Serious side effects - Call Doctor Right Away!
Indigestion/stomach pain
Nausea/vomiting
Diarrhea/constipation
Hives/rash/itching
Swelling of face, eyes, mouth, throat, tongue,
lips, hands, feet, ankles, or lower legs
Difficulty breathing/swallowing
Ursodeoxycholic acid/ursodiol (UDCA)
Side effects - Call Doctor if these are severe
Itching
Fatigue
Abdominal pain and discomfort
Mouth/throat pain
Rash
Dizziness
Joint pain
Constipation
Thyroid function abnormality
Eczema
Obeticholic acid (OCA) - For patients who don't
respond to UDCA. May worsen symptoms. Don't take if
you have cirrhosis
Liver Transplant
For patients with liver
failure when other
treatment options have
been ruled out by your
doctor
PBC Complications
High cholesterol - Treat with statins and
lifestyle changes
Osteoporosis - medicines that
slow/stop bone loss and improve bone
density; calcium and vitamin D
supplements
Low fat-soluble vitamin levels - vitamin
A, D, E, K supplements
Dry eyes and dry mouth due to sicca
syndrome - regular dental and eye
exams
Preventing further liver damage
Quit smoking
Take medicines/supplements as directed
Avoid alcohol
Have regular checkups
Maintain healthy body weight
Websites/Support Groups
American Liver Foundation PBC Support Group on Facebook:
https://www.facebook.com/groups/1881641552083412/
American Liver Foundation PBC Support Group on Inspire:
https://www.inspire.com/groups/american-liver-foundation/
Primary Biliary Cirrhosis Support Group (PBCers): http://www.PBCers.org

2. Runny nose
Other signs of infection
Frequent urination
Painful urination
Muscle pain
Hair loss
Indigestion
Stomach pain/discomfort
Nausea
Vomiting
Diarrhea
Constipation
Hives
Rash
Itching
My Treatment Plan
Diagnosis Date: ______________________
Albumin __________
Alpha1-antitrypsin __________
Alkaline phosphatase (ALP) __________
Alanine aminotransferase (ALT) __________
Aspartate animotransferase (AST) __________
Gamma-glutamyl transpeptidase (GGT) __________
Prothrombin time (PT) __________
Bilirubin __________
Liver Test
Tired/Fatigue
Itching
Dry eyes
Dry mouth
Trouble concentrating/remembering
Symptoms
Treatment: ______________________
Start Date: ______________________
Side Effects
Dizziness
Headache
Cough
Fever
Sore Throat
Mouth or throat pain
Thyroid function
abnormality
Fainting
Joint pain
Constipation
Dryness, irritation, redness,
crusting, or drainage of the
skin
Take medicine as prescribed
Take supplements as needed
Quit smoking
Avoid alcohol
I need to:
Notes from visit:
Next Appointment: ____________________
____________________
____________________
Fatigue
Eczema
Difficulty breathing or
swallowing
How severe is your itching?
MILD --------------------------------------------------> SEVERE