Confused how pbc diagnosis works?

[Pbcornot]

What criteria defines Pbc definitively? I had an elevated Ama 2x second at 90. First i believe was high due to 5 months on metrozondale. Severe fatigue since 2015 n progressively worsening to weakness n leg spasms current with liver discomfort. All my blood levels normal after second bloodwork except Ama higher. 6 year old biopsy normal. Has my doc jumped the gun by prescribing me urso based on this. I have had chronic pain with elevated sed rate since 2002, but docs never found the cause until now, so i was labeled fibromyalgia n cfs. Are there any other conditions that can alter ama?

[butterflyEi]

Hi Pbcornot

The following is taken from the Bear Facts magazine pull out EASL guidelines which has been noted by Professor Jones.

"Most cases of PBC can be diagnosed with a combination of blood liver 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 yur overall diagnosis or prognosis."

From what I understand the sooner a sufferer of PBC starts on URSO the better outcome for most can be hoped for.

best wishes

[Michiganpbc]

Here in Michigan it’s diagnosed by positive AMA and liver biopsy and elevated liver function blood tests. If your biopsy is 6 years old I would ask for a biopsy to confirm and to rule out other diseases so you know for sure.

[GrittyReads]

AMAs alone are not enough to diagnose PBC. The detail that butterfylyEi quotes states AMAs 'and' blood liver tests. If these liver function tests are okay, it is likely to be another issue rather than PBC.

Also, the level of AMAs is not supposed to be significant in indicating the severity or progression of PBC, when people are fully diagnosed with PBC.

Contact the 'PBC Foundation' - link above to their website, with phone and email contact details. Their advisors are lovely and well-trained.

Also, in their magazine 'Bear Facts' they recently issued an 8-page, simplified, outline of the details and diagnostic procedures that Medics are supposed to follow in the diagnosis of PBC - this was recently produced as a longer document, to be issued to all Medics (worldwide? certainly UK/Eu/US) to follow when diagnosing PBC. This was deemed necessary as there is still much confusion among qualified Medics about the diagnosis of PBC.

If your liver function tests are good, but the Drs are continuing to fail to explain your illness, then I agree with Michiganpbc, that you should ask for another biopsy. But, in addition your Drs really should be doing all they can to rule out all other autoimmune conditions - especially all the other conditions that are related to AMA (there are lots of different sub-types of AMA that code for other conditions), as well as checking for other liver issues.

Hope this helps, if necessary insist on the biopsy and ask to see a liver specialist, maybe a PBC specialist, who may - at least - be able to rule out PBC.

Take care.

[Pbcornot in reply to GrittyReads]

Thank you so much for all this helpful information. I really am in a knot over this feeling that i have been prescribed medicine without actual confirmation of pbc. Also, I noted that urso had sodium laurel sulfate which in shampoo causes rashes for me i live in california

[kimphoebe]

It can't do any arm to take uso before dx. It's only a bile acid so it's safe to take.

[Hidden]

Diagnosis

Abnormalities on laboratory studies include the following:

Significant elevations of the alkaline phosphatase (ALP), γ-glutamyl transpeptidase (GGTP), and immunoglobulin levels (mainly IgM): Usually the most prominent findings

Elevation of the aminotransferases alanine aminotransferase (ALT) and aspartate aminotransferase (AST)

Increased lipid and cholesterol levels, with an increased HDL fraction

Increased erythrocyte sedimentation rate

Elevated bilirubin level, prolonged prothrombin time, and decreased albumin level: Indicate progression of disease to cirrhosis

Thrombocytopenia: Indicates portal hypertension

Antinuclear antibodies (ANAs): Can be identified in 20-50% of patients with PBC

Less common abnormalities include elevated levels of the following:

Ceruloplasmin

Bile acids

Serum hyaluronate

The hallmark of PBC is the presence of antimitochondrial antibodies (AMAs) in serum. AMAs can be found in 90-95% of patients with PBC, and they have a specificity of 98% for this disease. Four AMA profiles occur:

Profile A: Positive for anti-M9 only

Profile B: Anti-M9 and/or anti-M2–positive by ELISA

Profile C: Anti-M2, anti-M4, and/or anti-M8–positive by ELISA

Profile D: Anti-M2, anti-M4, and/or anti-M8–positive by ELISA and complement-fixation test

Patients with profile A or B have a better disease course than patients with profile C or D.

Some patients have clinical, biochemical, and histologic features of PBC, but their sera are negative for AMA. The diagnosis of autoimmune cholangitis has been used for these patients.

[Sachin1234]

Any autoimmune immune disease can alter ama test...there is no specific criteria for pbc the criteria most drs follows are combination of patient’s symptoms like itching, fatigue, dryness with patient abnormal liver panel.. after that to confirm they do ama and liver biopsy test...