My daughter has had a lot of blood tests done and all clear, but the ama was positive. She had lfts etc and all fine and she has no symptons. She has been told she will need to have blood tests in a year. I do not understand , has she got pbc or will she get it in the future.
Thank you.
Hi Winnie 1955.
That was me until recently. I have had high AMAs for 5-6 years that I know of and have had no symptoms until recently. Some people have high AMAs but never go on to develop PBC. I was only formerly diagnosed with PBC in July this year as I had my gall bladder removed and consented to a liver biopsy at the same time. Liver shows some signs of scarring, but my lfts are all normal.
I understand how scary it is, I went on the internet and scared myself silly when I first found out that I 'may' have PBC. The best thing you can do is be there, be supportive and take things as they come.
Hope that helps x
Melm74 - I couldn't have said it better. You're story is similar to mine. I also have scarring, had high AMA's for 7 yrs. Until the itching and nausea started my doctor didn't even realize something was off.
I went on the internet and drove myself crazy too!
My family was very supportive at first but now I think they are used to it and I don't bother them with every liitle thing. It would be hard on them.
Winnie - just knowing you are there for her will make the world of difference to her!
Hello Winnie1955.
Did your daughter actually ask if she had a diagnosis of a condition. Normally a positive AMA blood test is normally diagnosis for PBC but it is said to be that for a diagnosis on that basis as I understand it, you have to have symptoms (ie itching and/or fatigue are the main ones. I had both back in early 2010, it was itching that took me the the GP, didn't think much of fatigue at the time) and along with abnormal LFTs (and usually the GGT is raised). (LFTs are Liver Function Test.) I was diagnosed with PBC on these. (Diagnosed with PBC Dec 2010, started on ursodeoxycholic acid at aged 46. I am doing well and fatigue vanished at some point year after diagnosis, itching does remain but seems to be cotnained and only annoys at night.)
Now AMAs can fluctuate. I was said to have a 'high titre' at diagnosis. I've never had arecheck nor do I intend doing so if requested as I still itch and my LFTs though still abnormal are not abnormally so these days. That is good enough for me. Once you have PBC there is no way of it going away and as yet there is no cure. But PBC can apparently stop and start.
It sounds as if your daughter may have PBC but with normal LFTs and also being asymptomatic the only thing it seems likely that a doctor would do is monitor bloods at intervals and then deal with those if there are any future changes.
If I was concerned I'd contact the doctor's secretary if she got to the hospital and had these tests or contact her own GP and ask for an explanation of what the positive result for AMA did actually translate to.
With this being known now and your daughter being monitored blood-wise at intervals, I think it does pay to look after oneself even better than you might have done. (I always thought I did but got PBC.) She might consider making any changes to any alcohol intake for instance (I was never a drinker and following my first abnormal LFTs 9mths prior to diagnosis I just chose to not even bother having the odd glass and it doesn't bother me as I was never that bothered prior. If she is a smoker it can apparently pay to stop smoking (I've never been one). I am also an advocate in a diet that is that bit lower in fat though in PBC you still do need to have a recommended daily fat intake as it is needed for the absorption of certain fat-soluble vitamins (D is one that we can make ourselves by being in the sun) that tend to be quite important with diagnosed PBC.
Your daughter might never go on to be plagued with symptons of PBC if that is what is thought she has, a lot don't. I never knew I had PBC until I had symptons of it. The doctor at the hospital did think I had started with PBC a few years prior but I never had any cause to see a doctor and any LFTs taken for quite some years so first I knew was when I started itching.
From the time of being diagnosed with PBC untill my transplant was 2 n half years. But throughout I always remained positive.. Good luck to your daughter..
Ama positivity occurs in approximately 0.7% of the population. the prevalence of pbc, even in women, is much lower. if there are no other indicators, I'd say the probability that she will get pbc is very small. but, to be cautious, she needs to have her levels checked regularly. as long as alp is normal, I wouldn't worry about it.
Interesting Kevin733.
Where have you got this information from?
If you are diagnosed with PBC you have PBC regardless of whether you end up with symptons of it or continue to have normal LFTs or go the 'other way' and get symptons of it and the LFTs (and GGT) start to climb.
That is the annoying thing about PBC I have found. You just don't know as in my case how it is going to progress. I for one have better LFTs and GGT than I had during 2010 (diagnosed 4yrs today) and I'd say I feel pretty normal. I still itch at night and that is the only way myself I know I am stuck with this PBC.
Hi Peridot,
I wish to associate myself with what GrittyReads writes below. Refer to the study "Characterization of Antimitochondrial Antibodies in Healthy Adults," for example. It tested the sera of 1,530 healthy adults in Italy. Nine of them (0.59%) were found to be AMA-positive. Notably, the rate among men (over 0.7%) was actually higher than the rate among women.
According to the highest available estimates (see Wikipedia and elsewhere), the prevalence rate of PBC is, at most, 1 in 4000 (0.025%).
This means that, in a random selection of 1,530 health adults, we would expect to find, at most, one instance of PBC. Yet they found nine instances of AMA positivity. On further analysis, only one of the nine (a 72 year old woman) had serological characteristics consistent with PBC, although none of them were diagnosed.
In the absence of symptoms, abnormal LFTs, histiological findings, comorbid autoimmune diseases, etc., it's therefore spurious to equate AMA positivity alone with PBC. The fact that men and women are AMA positive at roughly equal rates, but women have a higher rate of PBC, is also suggestive of this.
From these statistics it follows that the probability of having PBC, given AMA positivity but no other indicators, is approximately 1% for men and 10% for women.
Hello again Kevin733.
Reading what you have put, this study that was performed in Italy to me isn't really a whole picture. It has been found that certain parts of the globe doesn't have an high incidence of PBC and others do. It is also said that those with PBC it is around 95% that are females.
Now I have just rechecked and this is from the PBC Foundation:- 'AMA can be detected in approximately 95% of PBC patients but less than 0.5% of the healthy population.'
It is true that a diagnostic of diagnosing a person with PBC just going from the AMAs and that person being asymptomatic may not be a correct diagnosis. I think in most cases patients do like myself present to a GP with certain other symptons that leads to PBC diagnosis via AMAs following abnormal LFTs.
The only way to diagnose a patient who has AMAs if it warranted at the time would be for a liver biopsy.
I know I don't actually go via statistics simply because over the past 4yrs now I've thought at times how on earth did I come by this PBC and then when you start to think, you then end up ruling certain things out due to certain gender characteristics (ie pregnancy being one of them).
I think for now we will all go on wondering and maybe some day someone hits on some idea that might just involve everyone who went on to develop PBC.
Thank you everyone, my daughter is not a worrier like me. She said that no point as she now knows what to look out for and she will have lft s done. She does not smoke and only drinks on special occasions. She seems really well and she will go to the doctors if she had any worries. It is just a shock at the time as she only had routine tests done not for a diagnosis of anything. Thank you again everybody and take care.
Hi Winnie1955,
It's great that she's got you, and it also sounds like she's got the best possible approach to life and this annoying condition. Stress is at the root of much illness, especially autoimmune conditions, and the best thing to do with PBC (or the risk of it) is be happy, positive, enjoy life, and look after yourself: good diet (the PBC Foundation has info, if you have not yet seen their site - they host this post on 'Health Unlocked' - see link at top of page) exercise, maybe don't drink ... or only in moderation ... or do other things that are bad for the liver, but basically don't worry and enjoy life.
I'd agree with what Kevin733 says above. There is a far, far higher incidence of people who test +ve for AMAs than those who go on to develop PBC. If everyone in the UK were tested for AMAs, and then those were treated as if they'd got PBC, without other indications, then the NHS - and all private care - would probably collapse. Just because 95% of people with PBC have AMAs, is not at all the same as 95% of people with AMAs getting PBC. I've had AMAs for about 23 (?) years, and my lfts are still fine and I have no symptoms. I just have regular blood tests (lfts) and have had a few ultrasounds. I may develop PBC, but I'm still showing no signs.
Strictly speaking, for a 'formal' diagnosis of PBC at least 2 out of 3 diagnostic criteria need to be present, that is:
1) The presence of AMAs , and/or:
2) Abnormal liver function tests, and/or:
3) a biopsy of the liver that shows damage to the bile ducts.
[NB this not 'my opinion' it is what I have been told (informally) by a leading PBC consultant]
Ideally all three are needed but 1) plus 2) is usually taken as enough, especially if there are symptoms. If there were only AMAs and symptoms of PBC a biopsy might be offered, although they are far more likely to do ultrasounds, fibroscan, MRCP scan etc. first. It might be an idea if she had an ultrasound, but if the consultant know his stuff he may feel sure there's no need. It does seem to be the case that diagnosing people on AMAs alone is creeping up, but many consultants and GPs think this is wrong - for one thing it plays havoc with insurance - and makes people worry when there is no need.
Reassure your daughter, and so long as she's looking after herself, having regular blood checks and knows what to look out for, then she's best not having a 'label' to worry her.
All the best to both of you.
Thank you gritty reads you have made me feel more relaxed and it has been really helpful to read all my replys. Thank you again to everyonex
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