Hi. Sorry that your going through so much stress. It is possible to have AMA and not actually go on to have pbc. Not sure of the figures but think it’s about 5% if people with positive AMA don’t have it. I’m sure someone with more knowledge will come along that can give you more details.
However it is good that they are following this up. Fingers crossed for you. I know it’s hard but try not to stress too much.
I have AMAs, I've possibly had them all my life, but it's been known since 1992 ... and I don't have PBC - or anything apart from creeping old age!!
The AMAs were noted in 1992, during routine bloods for aching and tiredness: my Mum had died not long before - I nursed her - followed by a really stressful time with work, degree and my dad. They didn't tell me much about the AMAs then, but I saw a rheumatologist and a liver consultant and was tested with, and fo,r absolutely everything = nothing wrong or worrying! They told me AMAs could indicate some conditions and they would give me blood tests every year, but just having AMAs alone wasn't an issue - they didn't mention PBC then, so I didn't worry.
All these years later and I still don't have PBC, I just have blood tests (liver function tests) every year. There have been some ups and downs - but no actual illness - all more human related: eg a new-to-me consultant in a new area tried to say I did have PBC ... However, a few chats on here, and with the PBC Foundation people - followed by a trip to one of the country's leading PBC specialists ... and I was told 'no PBC' and I'm unlikely to ever get it. The consultant told me that about 10% of blood donors are found to have AMAs, but only about 1.5 - 2.0% of those ever go on to develop PBC. So do try to stop worrying: stress just makes everything worse!!
They should check what type of AMAs - as there are different sub-types that code for other autoimmune conditions - and they should also check you for all these other conditions, as well as lots of other autoimmune conditions (lupus, sjorgrens, etc), and all other liver issues. AMA-M2 is the type of ama most linked to PBC - but I have that, though, and in a high level ... NB: the level of AMA-M2 isn't supposed to make any difference to the likelihood of PBC! ... and I still don't have anything!
Also, they will keep a close eye on you for a while, with more frequent blood tests, but if you have no symptoms and the tests stay clear, then you will just need annual liver function blood tests.
Try to not worry about all the tests. It's good, it means they are doing their job and checking for other things, but so far all is good, and is likely to remain so. About PBC in general, talk to the people at the PBC foundation - link at top of page, or for now just look around the site: don't look at online stuff though, as most of it is out of date, or wrong and mostly over-scary.
Hope this helps, ask more if you want to - anytime.
Meanwhile, try to have fun and do things you love and that make you happy: treat yourself, enjoy life and avoid stress and worry.
I hope Gritty finds this post as she will be able to help more than I can.
There are many many many people with positive AMA who never ever ever develop PBC. However, as you have AMA+, it would make good clinical sense to monitor you every year or so to look for any changes in your blood work. Also, if symptoms do present ever in the future, you have a good idea of where to investigate first.
That all said, statistically it is much more likely to be one of the ones who never develops PBC than someone who does.
This reminds me, I need to go and recheck the number of people with AMA+ who never develop PBC. The number is astoundingly high, I promise.
grittyreads is quite knowledgable about this. If you go by 2% go on to develop pbc then that means you have 98% chance of not having it. Pretty good odds. Sending prayers your way.
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