Yesterday I was given a diagnosis of "PBC" (Primary Biliary Cirrhosis), which has nothing to do with ALS. You'd think that one disease would be enough! Fortunately, it is a mild and early form of PBC and the only lifestyle change I need to make is to now take 2 pills a day to manage it. "Keep Calm and Carry On!"
I am very fortunate to have many sources of inspiration, and of course love and support from across the globe.
Patient information: Primary biliary cirrhosis (The Basics)
Written by the doctors and editors at UpToDate. All topics are updated as new evidence becomes available and our peer review process is complete.
What is primary biliary cirrhosis? — Primary biliary cirrhosis (called “PBC” here) is a disease that damages the liver. The liver is a big organ in the upper right side of the belly. PBC happens when the body’s infection-fighting system, called the “immune system,” attacks the liver.
PBC is a serious disease. It can scar the liver and make it stop working. This can cause death. Most people who get PBC are women, but men sometimes get it.
What are the symptoms of primary biliary cirrhosis? — Some people with PBC have no symptoms. When symptoms do happen, they can include:
●Feeling very tired – People who have PBC are often sleepy in the daytime, even if they slept at night.
●Itching – This can be worse at night, if a person wears tight or itchy clothes, or in hot weather.
●Skin changes – These can include:
•Hives – Red, puffy areas that happen where a person scratches or rubs the skin.
•Dark patches on the skin
•Yellow color of the skin and whites of the eyes – This is called “jaundice.”
●Pain in the joints
●Dry eyes and mouth
●Belly pain (on the upper right side of the belly)
●Losing weight without trying
●Memory and thinking problems
How is primary biliary cirrhosis treated? — Doctors treat PBC with medicines to slow down the liver damage. Other treatments include:
●Diet changes – For example, some people with PBC need to eat less fat.
●Vitamins – Some people with PBC do not get enough of certain vitamins from food. If you are not getting enough vitamins, the doctor can tell you which vitamins to take and how much. Do NOT take any vitamins or medicines without talking to your doctor or nurse first.
●Medicines to treat health problems caused by PBC, such as itching or anemia (having too few red blood cells)
●Liver transplant – If your PBC is severe, or the medicines to slow down liver damage do not work, you might need a new liver. During a transplant, a doctor does surgery to replace the damaged liver with a healthy one.
Ask your doctor if you might need a liver transplant for PBC. If you do, your doctor will do more tests to make sure you are healthy enough for this kind of surgery. Then your doctor will put you on a waiting list for a liver transplant. Liver transplants are given to people with the most damaged livers first. People often have to wait up to 2 years for a new liver.