positive AMA and ANA for 4 years normal Lifts what to do?

[Tatianau]

Hello I am new here was wondering if anyone has similar experience I am 37 years old female, have positive ANA and AMA since 2014, picked up by a random test, since them i have been doing regular screening all my Lifts is in the normal range , never elevated, GGT normal, i have been tested for all the autoimmune diseases all negative, my gastro is convinced I have PBC, but against biopsy, he didnt not put me on Urso due to the normal liver function test, did anyone has similar situation? And can i have progressive PBC’s with normal LIFT’s ?

[butterflyEi]

HI, it would seem that no one has been able to share a similar experience with you so I am jumping in to share a link from the PBC Foundation. This page is in the section for medical professionals but I hope it will help you go forward with your question or will help your primary provider. pbcfoundation.org.uk/health...

For myself I know that I went for at least 10- years in between my initial presentation to my GP and being referred to a specialist to get a diagnosis. I am one of the fortunate ones where my blood results are usually fairly constant although unfortunately I suffer with the so called itch of PBC. PBC is a slow progressive disease for most people.

I hope this is of some help to you.

best wishes

[GrittyReads]

Hi Tatianau,

I test positive for AMAs (although not ANA), but I definitely do not have PBC.

AMAs alone are not enough for a diagnosis of PBC. Do check the link that butterflyEi has sent you, as I'm sure it will lead you - via the 'PBC Foundation' website to the recently published official/formal guidelines (for all health professionals) on the diagnosis of PBC.

Simply there have to be 2 out of 3 diagnostic criteria present to diagnose PBC.

1 - presence of AMAs (usually sub-type, AMA-M2) and/or:

2 - abnormal bloods/liver function tests (lfts), over a period of time, that are abnormal in a manner typical of PBC. and/or:

3 - a liver biopsy that shows damage to the microscopic biliary tubules of the liver, in a form that is typical of PBC.

One of these, alone, is not enough for a diagnosis of PBC. Diagnosis is usually by 1 and 2, but if there is any doubt (eg just the abnormal lfts) then these would be monitored, your health history and family history should be checked, and it would also depend if you have symptoms of PBC: then a biopsy (or maybe a fibroscan - less invasive) would be done to check the liver. Urso should not be given unless PBC has been clearly diagnosed.

As I said, I don't know much about the presence of ANAs, but I think that signals a different liver condition.

I have AMAs, high level (the level is not relevant) and it's been known since 1992. I have blood tests to check my lfts every year, but so far I'm still perfectly fine, with no signs of PBC (or anything else, much, really, and I'm in my 60s). About 10+ years ago, a new-to-me GP (we'd moved to Devon, from Hull) panicked at the AMAs, and sent me to a liver specislist. Like the Hull specialist he said I didn't have PBC, but when the letter came through he had given me a pbc-ish diagnosis which insurance would not accept (eg Travel). I made a fuss and eventually saw one of the country's leading PBC specialists, who says I don't have PBC.

[GrittyReads]

Sorry … pressed paragraph twice and it sent my message before I'd finished!!

I would talk to the trained advisors at the 'PBC Foundation' who host this site - link at top. Their website is great, as well, and it does have the formal guidelines to diagnosis of PBC. They may also be able to help with the ANA as well.

I would ask to see a senior liver consultant, rather than a gastro, preferably a PBC specialist.

Hope this helps, take care,

Gritty

[Nihan]

Hello, I’ve been positive for AMA PBC specific and ANA since 2014 as well. My ALT and AST are little higher than normal range. Recently had a liver biopsy came back with no sign on PBC. However, noted that at the beginning of the disease the damage might be patchy and missed on biopsy, I did show some spots with inflammation.

I have been diagnosed and undiagnosed with PBC twice since 2014. Currently my doctor doesn’t believe that I have a Liver Disease. I will do blood work every 6 months and ultrasound every year....

[PBCRobert Partner]

There are many people out there in a similar situation of AMA + but no PBC.

At the beginning, they often feel they are sitting on a time-bomb waiting for the PBC to go off. We do not have full stats but there are many people who just remain AMA+ and do not ever develop PBC.

Monitoring is prudent. Remember that it is used to see IF anything changes, not when.