Latest AMA results

[Seajeanie]

Latest blood work from March 1st results showed AMA ^^1:160^^ (normal is 1:20), everything else is within normal range. I have been on URSO for approx 2 years. Should the AMA be this high? No response from GP or liver specialist so far.

[Hidden]

Hello Seajeanie.

I only ever had the one antibodies check (AMA and ANA same time) at the hospital on my first visit late 2010. I was found to have what the consultant described 'high titre' of the AMAs but the ANA was negative. Due to itching and also abnormal liver function test and GGT he diagnosed me with PBC.

I am in the UK and it doesn't seem the norm I think to have the AMAs repeated. (I cannot say for anyone being considered for liver transplant or perhaps taking part in any medical trials.) At the end of the day regardless we will always have PBC unless some cure comes along.

My own theory is that perhaps when we have a fluctuation in the AMAs then maybe it has slowed considerably if low or not showing at a later date after the initial check when they were present or maybe it is on the progression when it is is showing high.

I am not that interested to be truthful as I have diagnosed PBC and I just go on how I am and get on with life. It might be worth asking the hepatologist you are seeing though just out of interest.

[Seajeanie in reply to Hidden]

Thanks Peridot.

[GrittyReads]

I have annual blood tests to check my liver enzymes, or 'liver function tests' (lfts), and it is my understanding that the lfts are the most important guide to how the Urso is helping your liver to cope with the PBC.

Like Peridot, my AMA is not routinely tested, and if you check in the 'PBC Foundation'* handbook you will see that the level of AMA is not taken as a guide to the severity of PBC.

Some people (about 5% of those with PBC) have PBC but do not test positive for AMAs, while far more people test positive for AMAs than those who ever go on to develop PBC. I have had AMAs for over 23 years and still do not have PBC, although I have the lft blood tests every year - just to keep an eye on things. Sadly even some consultants do not seem to appreciate this, and I was wrongly diagnosed ['labelled'] with PBC for about 8 years - I recently had that diagnosis overthrown.

AMAs are a strong indicator for the presence of PBC, and other tests (lfts, ultrasound, etc) should always be done if AMAs are present, but AMAs - alone - are not enough for a diagnosis of PBC, and are not a significant guide to its severity.

Get copies of your liver function tests for the past few years, from your GP (you have a 'right' to have copies of your test results, although there may be a small charge for recent tests, and a larger charge for older tests where more searching of older records is involved) and then you can see how your lfts have fared since being on the urso, compared to before you were taking it'; then you can talk to the PBC Foundation advisors about your results, if you are unsure or worried.

* NB The 'PBC F' host this site on 'Health Unlocked' and if you are not aware of them and their work, there is a link to their website at the top of this page. There you will find contact details and can talk to their wonderful trained advisors - and you can join, it's free, and get a copy of their handbook as well as access to other resources.

Hope this helps.

[Seajeanie in reply to GrittyReads]

Thank you, that's helpful.

[Della_Williams]

95% of people will be AMA+ and others AMA-, it's just an indicator (marker) of PBC and not how severe your PBC is. Just like the higher the number also does not have any correlation either with progression. For instance, my AMA is 1:1620. The doctor explained it just means there's no doubt I have PBC. At a PBC conference many years ago, a doctor explained the AMA as such, think of it as taking a glass of lemonade, and pouring half of that glass into another glass of water to dilute it, and repeating the process over and over again into a glass of water. In my case it took 1,620 times until they did not find a trace of lemonade. Also, they did not find any correlation with higher numbers in patients having a more aggressive form of PBC. I used to worry about that. That was a long time ago. Perhaps it's changed since then. If anyone knows differently, please share. Just sharing what I know. Also I agree the AMA is usually done once to diagnose PBCin the beginning. There is no need to do the test again, unless you're AMA-, doctors may want to keep checking. That's my two cents. Hope everyone is well. Take care, Ivette, Chicago 

[Seajeanie in reply to Della_Williams]

Thank you Delta_Williams!