Second opinion I don’t understand

[Zuske]

Ha everyone I am new here, since 18 months diagnosed with PBC, just had my second opinion and tested this time AMA and ANA NEG..? Does that mean I don’t have PBC anymore?? My ALP, ALAT, ASAT and Igg look almost good but isn’t that probably because the Ursochol is doing his work? I really don’t want to stop the Ursochol, I really would appreciate your answer

[ninjagirlwebb]

What does your 2nd opinion doctor say? If your pbc is controlled, alk phos and LFTs can be brought back to normal. Some people can have pbc with a negative ama.

The diagnosis of PBC is based on the presence of at least 2 of 3 key criteria including a persistent elevation of serum alkaline phosphatase, the presence of anti-mitochondrial antibodies (AMA), and liver biopsy histology consistent with PBC.

Likely if you stopped usro, your alk phos will go back up. But really your doctor would be the best person to answer your question and explain the results to you. You either have pbc or you don’t because you were misdiagnosed but if you have it, you will always have it. It is not curable.

[Zuske in reply to ninjagirlwebb]

Thank you ninjagirl, again I wil have conversations with both doctors, they have a different opinion, but I do have fibrose 3 so I want to know what is the conclusion!

[ninjagirlwebb in reply to Zuske]

It was hard to diagnose my pbc from blood work alone so I had a liver biopsy done and my hepatologist also sent the slides to a top liver pathologist expert to get a 2nd opinion. Then I was diagnosed with the pbc.

[martinap]

I had the same it happens. My AMA 2 even doctor took me off labs went up again changed doctor was and put on Ursofalk again. Yes it happens that your AMA is tested negative in follow up tests and you can still have PBC. I am now diagnosed AMA negative PBC. Ursofalk was in the end not working alone so Bezalip was added which brought levels down to within range. Good luck with your treatment and always follow your gut feeling.

[Zuske in reply to martinap]

Thanks so much for your answer! I will follow my gut feeling !!!

[Lorelle09]

Hi Zuske,

I am in the middle of getting diagnosed so I’m trying to get as much info as I can. Can I ask how high your LFTs were for AST, ALT, and ALP?

[Zuske in reply to Lorelle09]

ASAT was 78 / ALAT 194/ Alk. Fosfatase 100/ gamma-GT 90, My Alkalische Fosfatase is at the moment between 125/135

[Lorelle09 in reply to Zuske]

Thank you. I know they say the alp is usually higher but your was not as high which is how mine is at the moment. Maybe it take longer for alp to rise in comparison to alt.