Detecting primary biliary cholangitisa (PBC) as early as possible may lead to better management of the disease.
Getting a diagnosis for PBC can often take a long time because the disease is rare and many healthcare providers may not check for it until they have ruled out more common conditions first.
a Formerly known as primary biliary cirrhosis.
“The whole process [of getting diagnosed with PBC] took 5 years in total. [W]hen I got diagnosed...I was quite relieved, because after the 5-year journey...there were some answers”
— Wendy, England
“I don't know, I think I was relieved that I finally knew what was going on, or somebody actually listen to me for once, or I finally have a diagnosis and here's what you can do about it.”
— Nishele, Minnesota
Most people who have PBC do not have symptoms at the time they are diagnosed.
In fact, many people who have PBC get diagnosed because their livers show signs of damage during routine liver testing.
- Routine testing is a common way to see how well the liver is working and often includes measuring
- alkaline phosphatase (ALP)
- alanine aminotransferase (ALT)
- aspartate aminotransferase (AST)
- gamma-glutamyl transpeptidase (GGT)
- prothrombin time (PT)
- In people who do show symptoms, the most common signs of PBC are fatigue and itching
The blood test done by a healthcare provider to confirm a diagnosis of PBC can also help set a benchmark for disease management.
One of the key markers that healthcare providers first look at to diagnose PBC is your ALP level; ALP can then be tracked over time to help manage your disease.
- ALP, sometimes called “alk phos,” is an enzyme found in the body
- An abnormally high ALP level can be a sign of liver damage
- In early stages of PBC, abnormally high ALP can be an early warning sign to healthcare providers that PBC may be present
- Beyond diagnosis, ALP can be used to help monitor your disease over time
“When I first got the diagnosis...when I went to the GI doctor she actually told me, ‘I’m going to run more whole liver panel tests on you.’”
— Nishele, Minnesota
“Well my understanding [of ALP] isn’t that clear. I just know that the alkaline phosphatase is the most important one.”
— Susan, Massachusetts
It is also critical to test for antimitochondrial antibodies (AMAs) when PBC is suspected.
- AMAs are proteins made by the immune system
- The presence of AMAs is a sign of PBC
Some doctors perform a liver biopsy to confirm a diagnosis of PBC and to find out how far the disease has progressed.
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Getting an early diagnosis is an important first step in disease management because the medicine available to treat PBC works best before the disease has progressed too far.