AMA positive but AMA2 negative

Hi all, just wondering about the AMA vs AMA2 test. I asked my rheumatologist to do the AMA 2 which is specific to PBC as I have AMA positive 360:1 titre. She said there was no point that positive AMA 2 test can mean several conditions so best to just be referred to hepatologist. My question is that she should surely do this to save time and be prepared fir hep appointment?

Does anyone out there have positive AMA BUT not AMA2 but still have diagnosed PBC.

My next question is: which test is better at diagnosing PBC FI Ros an or liver ultrasound. They have ordered a liver ultrasound.

Any replies would be much appreciated. 😊

[GrittyReads]

I would talk to the 'PBC Foundation' about this - link to their site at the top of the page, where you will find email and phone links to talk to their trained advisors - they are lovely.

My understanding is that AMA is an overall term for antimitochondrial antibodies, and that there are about ( 9 ??) different 'sub-types' of AMA, with different ones being typical of different autoimmune conditions. As far as I am aware it is the AMA-M2 sub-type that is most associated with PBC, and to my understanding ... just knowing you have AMAs, without knowing the sub-types, means you may have other conditions. [Nb If you Google 'sub-types of AMA' you should get info on the other sub-types.]

In other words, the facts as I have discussed them with my GPs and my hepatologist (as well as discussing them on here, numerous times, without being corrected by others - or by the 'PBC Foundation' monitors) are the opposite of what your rheumatologist seems to be saying to you.

In any case, just knowing you have AMAs does not mean you necessarily have PBC. For an official ' formal' diagnosis of PBC (according to UK/US/Eu criteria) you need 2 out of three diagnostic criteria:

- the presence of AMAs typical of PBC ... and/or:

- abnormal liver function tests (lfts) that are typical of PBC (my Hepatolgist pays particular note to high ALP and high GGT, although ALT and AST levels & others are important) ... and/or:

- a liver biopsy that shows damage to the micro-biliary tubules that is typical of PBC.

Also: liver ultrasound 'cannot diagnose PBC' (my liver consultant's words = a leading UK PBC specialist). It can show mass-scale scarring of the liver, which in a borderline case of PBC would probably lead to a liver biopsy, as well as more tests to rule out other liver conditions.

I hope this helps, talk to the PBC F, but I would fight to see a liver specialist, preferably one who deals with PBC. It is still relatively rare - despite all of us on here - and lots of GPs and non-liver specialists don't know much about it.

Take care.

[Hidden in reply to GrittyReads]

Thank you grittyreads! This is very helpful.