Is there anyone with pbc who's not had a liver biopsy yet

[karenlesley]

[Hidden]

Hi Karen, I was diagnosed with 'probable' PBC last two years ago, diagnosed by a positive AMA blood tests. Although I'm largely asymptomatic (I've also got Rheumatoid arthritis which could be masking some of the early symptoms) they just don't want to put me through a biopsy. If I get worse, maybe they will but til then they said there is no point.

Siân

[SuziS]

Yes! I am not sure when they decide this needs to be done... I guess it depends on the blood tests/symptoms (which I don't have)

[Hidden]

I was diagnosed in November, I had positive AMA and deranged liver function tests which is enough to make a definitive diagnosis, if you meet this criteria there is no need for biopsy. If autoimmune hepatitis is suspected a biopsy is required.

[witchiegirl]

There are quite clear guidelines on this now, and I think they try to avoid biopsy where poss. In the US I think biopsies are done more readily than in UK, also for staging of disease. I did read about this on an online search recently - sorry, no idea where now! 'PBC clinical guidelines' into a search engine of your choice may give you something??? or 'PBC diagnostic criteria'?

There's always been uncertainty about my diagnosis as i am AMA negative but have ANA and other antibodies. And several other AI conditions. I've had 2 biopsies, 12 or 13 years apart, and about 3 or 4 'liver related' diagnoses over the years! Latest one for me is AIH/PBC overlap.

[Hidden]

Hi

I have have 2 scans but no biopsys... The scans were very clear and apparently my liver looked fine, no one has even suggested a biopsy so far.

Lou

[Hidden]

I've not had a liver biopsy as I was diagnosed via the AMA test.

Seems the norm in the States to have a biopsy regardless of a positive AMA test.

I'm in England and it's not normally advised if there is no doubt about the AMA and presenting symptons.

I originally had a scan in 2010 (when I was diagnosed) which at the time just showed a bit of liver inflammation but on the whole I was informed it looked pretty much normal.

I know had I have been offered a biopsy after diagnose I'd not have taken it up. In the States it is said to be done for staging but I actually don't go in for this. I think in these times now blood work can give a pretty good idea along with symptons in PBC. Also it has to be noted that the area of a biopsy might not necessarily be the whole picture of the liver as it is extensive in size.

I've no future plans for a biopsy and moreso because prior to diagnose (whilst I was waiting the 6+ wks for the AMA results) I saw a programme on tv where 2 males were having scans on their livers live on air. One was obese and it was discovered he had fatty liver, the other was a man in his early 50's who was a declared alcoholic and it was said he had developed cirrhosis so that to me states if it can be seen via a scan there and then why have a biopsy?

I've no inclination to ever have a biopsy on my liver as to me that area then has to heal up but also I really am not interested in knowing about staging as there's not way at present of ever knowing if I'd ever reach some later on. I go with how I feel and how the bloods are looking, that is good enough for me.

[jrobertson1]

My consultant recommended a fibroscan instead. Scan showed little to no scarring across entire liver. As I understand it, the trouble with a biopsy seems to be that part tested my be fine while another part of the liver may be scarred.

[dinnyd]

I am in the US and a biopsy was suggested after a positive AMA blood test, but I refused. I see no positive reason to do this since it doesn't change the treatment.

[Karaliz]

Hi everyone,

I'm from Melbourne, Australia where the so called "gold standard "for definitive diagnosis of PBC is liver biopsy. Thus, I had one nearly 10 years ago at 38 to confirm diagnosis and a second one 18 months ago when my LFTS had markedly deteriorated to a) rule out any other liver disease and b) plan for the future. According to consultants here, PBC affects the liver in a uniform way so one sample would seem to be indicative of the state of the entire liver.

In my particular case I had fatigue but no other symptoms so it came as something of a shock when my bloods deteriorated so much and stage 3 fibrosis was revealed via biopsy. In other words I didn't feel that different but the disease progression had really accelerated.

I remember being told on diagnosis that it was a "glacial disease "i.e moved at the speed of a glacier but as with much of life there are always exceptions !!

Hope everyone's keeping well,

Cheers from Down Under.

[jess1990]

I've had PBC since 2007 and only had a biopsy in June 2012.

[Oidra]

I`ve had PBC for 13 years and no biopsy. I have had scans.

[2006]

I just saw a new Gastro. And he said my blood tests show positive for PBC so a biopsy was not needed. He would like to do one in the future. But - he said I could wait.