I know in the US that biopsies are more of the norm than in the UK. For those that have a positive AMA and normal ALP a biopsy may catch PBC in its earliest of stages. Also, there are those who have end stage PBC and have never had elevated ALP. I’m sure it’s a lower percentage, but a biopsy could have caught in a early stage when Urso would’ve done the most good. And there’s sometimes other possible co morbid liver diseases it can detect such as AIH, fatty liver etc. I guess if you fit the classic presentation of PBC and you have the positive AMAS and elevated ALP and it seems slim that there’s a possibility of any other liver disease then you may not want to go through a biopsy. This is just my opinion. Here’s an interesting article and it looks to be fairly recent. bmjopengastro.bmj.com/conte...
To biopsy or not: I know in the US that... - PBC Foundation
To biopsy or not
I had a fibroscan which was better choice than a biopsy I thought ..you do need an indicator ..the fibroscan confirmed cirhossis stage 1 two years ago after 24 years with PBC.
Good luck
How long have you been on urso? Glad you are still at stage 1 in after so many years!
Delighted to hear you are still at stage one after 24 yrs are you taking urso and do you take anything else or follow a certain diet would love to know thanks
bobbycat, could you clarify your statement - re: "the fibroscan confirmed cirhossis stage 1 two years ago after 24 years with PBC", please.
I read it as meaning you have reached Stage 4 of PBC and are now in Stage 1 of cirrhosis (cirrhosis itself has four stages). As far as I understand it, with PBC you are classed as being in Stage 4 once you have reached cirrhosis stage.
Others seem to understand your statement as meaning you are still in Stage 1 of PBC - which is it?
Hi, Yes I understand the confusion ...I have PBC stage 4 which is cirhossis stage 1.
Ah, that's what I thought you meant, sorry to hear that - I'm also Stage 4, but with advanced cirrhosis (and with all the bells and whistles that that implies). I've been diagnosed 29 years, so can't really complain too much.
Take care
Di
Ps....my consultant says stage 1 but after I had a bad bleed and was in hospital for a while last year Dr there said it could be stage 2....not sure who is right but I do feel more tired as time goes on...par for the course I suppose!
Glad to hear you are still doing well
In the US, from what I know (I live in the US), a liver biopsy is considered the most accurate way to determine the initial base line and staging. However, it is recommended to have it done only once. After that, use special liver ultrasound (fibroscan).
Here in ireland the hepatologists are using the fibroscan instead of biopsies
For those with positive ama and normal alp it would be a good idea to have a fibroscan rather than having a diagnosis based on blood work alone
I also had an ultrasound
I've never had a biopsy due to having AMA m2, and raised ALP. The consultant wanted to book a biopsy however when I asked him if I needed it for him to make a diagnosis, he said no. He confirmed Pbc from other tests, therefore I declined. 8 years later I had a fibroscan that measures the elasticity of the liver, I was in the normal to mild range on the score card. I don't think fibroscan can diagnose individual liver diseases you need other indicators, so I think the biopsy still has its place if it's needed for diagnosis.
Jean thanks for sharing the info very interesting
I don't have PBC, even though have AMAs: I have normal bloods, liver function etc. always have, and no symptoms, plus I have a perfectly normal health history and family health history with no worrying indications. My consultants have, more recently, done occasional ultrasounds, as this would show any mass scarring, and after 25 years of known AMAs (possibly all my life - some people just have AMAs) there would be something 'mass' showing if I had PBC.
If I felt worried enough to want more checks I would opt for a fibroscan rather than a biopsy. However, my consultant is one of the UK's (if not the world's) leading PBC consultants, and I trust him completely when he says that in my (long drawn out and briefly misdiagnosed as PBC) situation, it is not necessary.
I think each case has to be taken on merit, but I would not want a biopsy unless my consultant felt it was really necessary
I have followed you some time now as my case sounds a bit like yours. My question is if you’ve always had normal lft what led them to find positive AMAs?
Back in 1992 I went to my young GP feeling tired and down, but I also had some strange joint-aches. It was not long after my mum had died - I had nursed her through bowel cancer - and despite subsequently still managing to achieve my dream of doing a PhD, I was finding life hard. My GP suspected something in the rheumatism/arthritis area - because of family history - but, as a young, go-ahead newly qualified chap, he had me tested for everything. The only result that came back 'out of kilter', was +ve for AMAs. At the time the Doc just said that this could indicate a 'rheumatism-like issue, or maybe my liver was a bit off. I don't know how much was him being vague - so as not to scare me - or vague because knowledge of autoimmune conditions, including PBC, was fairly basic at the time.
So, I wasn't worried, and saw both a rheumatologist and a hepatologist - who did more lots tests and physical examinations and ultrasound scans (nb: consultants did their own then, and I must say, the liver scan was more thorough than anything, since). I was completely cleared of anything by the Rheumie, but the Hepatologist must have explained all, in detail, to my GP. However, the GP just told me that the antibodies I had, just indicated that I might develop an autoimmune condition in the future, so I had to have a blood tests every year, but it was unlikely, so not to worry.
I had clear blood tests, but moved to Devon in about 2005, and forgot about the tests for the first 2 years. The 'AMAs' were only picked up in 2006-7, when I mentioned the tests because I was having problems with pain in my wrists. The GP panicked, ordered bloods ... then when the results came back, she told me I'd got PBC: she didn't explain anything. It was just before Xmas: she said she would send me to see a liver consultant in the New Year and sent me home. I then Googled (remember all this online info wasn't around back in 1992) and nearly died of panic when I read what it said about 'PBC' online. I had the worst Xmas of my life!
It turned out that the Hepatolgist I saw in Devon still agreed with the original diagnosis, and more or less told me that I didn't have PBC, and that I just had to have liver/blood tests every year. However, when his letter came through his 'Diagnosis' (as opposed to a casual description of my state) was 'pre-symptomatic PBC'. I now know [from my GPs and my recent consultant] that this is not officially a diagnosis. However, because it was down on my records/letter as a 'diagnosis' I began to find out that many insurance companies in 2007, eg travel, would not cover me. I began to panic, yet kept being reassured by GPs in the practice .... although none of them challenged the diagnosis, and at first I didn't realise I could push for that. In the end I discovered the 'PBC Foundation' and Colleen - the founder - was a great help. Then I found other people on this site who were in my situation but not diagnosed, and it gave me courage to go back to my GPs and demand a second opinion.
By then I also knew who I wanted to see, and in 2015 I saw the consultant I currently refer to as 'mine' ... although - after extensive checks, scans, health/family talks etc, and exhaustive blood tests - he has signed me off as 'just' having AMAs and not having PBC. I still have blood tests every year, and all is still perfect.
So that is how I knew about AMAs, but also that I don't have PBC. I could still get it, and I still have tests every year, but my consultant thinks it unlikely after all this time.
Sorry it's so long - I think I'm putting off finishing 'the tree' and putting all the cards up!!
Hope this helps, have a great Christmas. Get back to me if you want to ask more, but meanwhile, treat yourself, have fun, and doo all you can to de-stress -- always the worst for any autoimmune situation.
Take care,
Gritty xx
I have elevated ALP and Ama positive I had the fiberscan already which was a 2 but my new doctor doesn't feel comfortable prescribing urso until after the liver biopsy as if it's fatty liver he said diet and exercise can help ...I also had a high CRP and sedimentation tests come back so he wants the Biopsy done
My logic has always been that, if you have a sick liver, you don’t poke it about!
I think that the USA has much more invasive techniques. I wouldn't want a biopsy, the liver is too big for it to be wholly accurate. I had a fibroscan of 10, which is significant fibrosis and my hepatolgist is a leading consultant in the UK.
👍
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