PBC diagnosing...

[tech63]

Hi! I’m new to this site and I’ve been diagnosed with PBC but don’t know how far along it is ct scan is normal other than fatty liver. Liver profile has been elevated for more than 15 yrs. ALK PHOS always elevated, fatigue and itching that driven me crazy for about 2 years. AMA is positive. Just had gall bladder removed after an ERCP that was to clear sludge in main bile duct, gallbladder walls were thickened and not functional. Day after ERCP got Pancreatitis and in hospital for a week. Had gallbladder removed 4 weeks after that. That all happened about a year ago and none of my symptoms have subsided. Is a biopsy needed?

[Ktltel]

Hi,

Nice to meet you. It sounds like the symptoms you've been having have been going on for some time now. Glad they are getting it all figured out. I'm guessing your on URSO?

😁You're asking a loaded question... Lol. Here in the U.S. biopsies are usually performed when there are liver issues suspected. In my personal experience, a biopsy "didn't" see my PBC. Think about it.... they take a tiny section of liver tissue from one spot out of a really big organ. So, from my biopsy, my doctor said I "didn't" have PBC. Lol... 2 years later after having an MRElastography or MRE, I was told I'm in early stage 2 with mild fibrosis. I can't tell you what to do or what to believe but, whatever your doctor says... ask to have an MRE. Not an MRI, but an MRE. Magnetic Resonance Elastography. It's 95-99% accurate in detecting early fibrosis associated with PBC. They staged my PBC off of my MRE. How you feeling?

Stella❤

mayoclinic.org/tests-proced...

[EileenUSA]

Hello,

The PBC Foundation UK provides this fantastic document regarding diagnosing and management guidelines for PBC. Renowned medical experts in PBC contribute.

pbcfoundation.org.uk/upload...

Here's a snippet from the document regarding biopsy use-

Guidelines 1 – 18

DIAGNOSING AND ASSESSING PBC

‘Once it is diagnosed, PBC is a very treatable disease,’

says Professor Jones. ‘Therefore, it is extremely

important that a diagnosis is made as soon as possible

but with minimum discomfort to the patient.’

Most cases of PBC can be diagnosed with a combination

of blood liver (LFT) tests and the AMA test. Sometimes

an equivalent of the AMA test will be carried out to look

for different types of antibodies but that will make no

difference to your overall diagnosis or prognosis. The

guidelines make it very clear that liver biopsy, which

carries a risk of bleeding and other side effects, should

not be used as a diagnostic tool expect except in a very

few cases (see later).

‘Unfortunately, liver biopsy has been offered far too

often, and incorrectly as a method of diagnosis in the

past,’ explains Professor Jones. ‘In fact, in around 90%

of cases, AMA and LFT tests together can provide a

definite diagnosis of PBC.

‘Crucially, if you have had AMA and LFT (usually Alk

Phos) tests which confirm you have PBC you do not

need usually a liver biopsy for diagnostic purposes.

Sometimes a biopsy will help with diagnosis and

management but your doctor should be able to explain

why this is the case, specifically.’

QUESTION TO ASK YOUR DOCTOR.

My PBC has already been diagnosed with liver blood

and AMA tests and the EASL Guidelines say that this is

sufficient confirmation that I have the disease. Please

can you explain why you are also offering me a biopsy?

[Sona_akb]

Hi,

I’m new too but has searched alot in this duration. As I know, if you have persistent high ALP and positive AMA and/or symptoms you’re frankly diagnosed by PBC and don’t need biopsy unless if overlap with AIH is suspected. Also, if your doctor needs to know your pbc stage, it also needs biopsy

Take care