Ama question

[melbourne]

Hi.. so I am ama positive no symptoms apart from right side dull pain sometimes. So I have been told I have been positive since November last year without knowing it. Saw a consultant and he said I could have been born with it and been positive since then without knowing. Is this true do u think. He also said as I have normal bloods that he will not say if I will get pbc and will not put me on any drugs as my liver tests are normal and so is my scan. What's going on? He was so laid back about pbc I thought he might fal out his chair.

[Facegirl7]

For me, my enzymes were elevated first and then further tests revealed positive AMA. That is your red flag for PBC. My 3D CT with contrast was completely normal. Ultimately it was my liver biopsy that gave the diagnosis PBC and AIH overlap Stage 3. Yes, you have probably had it for years and were asymptomatic. Push for a definitive diagnosis so you can start treatment as soon as possible. Take care.

[cowren]

Hi I have been diagnosed. 3 yrs now and that was from bloods i dont understand all this ama positive stuff I just take my urso 750 a day go to liver consultant. 2 times a year he says everything ok and I carry on I have had to cut my hours in work fatigue itch all over but always. Forget to ask all these question s when I go

[melbourne]

Thanks for replying. ... I don't get why some doctors can't tell me if I have pbc or not. I read that a ama is pbc and my doctor said not always. Confused

[Hidden in reply to melbourne]

How are your liver enzymes. My doctor is saying the same thing

[louie9]

Hi there, I'm in a similar situation I have positive ama, normal lfts and some joint pain (discovered the ama when investigating the joint pain). Ultrasound and CT all normal, I'm reluctant to have a biopsy though. My gastro is confused, he's not sure if I have very early PBC, or have positive ama and not PBC. Frustrating!

[Facegirl7]

Hi! My ct and ultrasound were normal. My AMA was positive and enzymes were elevated. Liver biopsy really is the gold standard still for diagnosis. My liver biopsy showed PBC with AIH overlap. My doc is at UCSD. Biopsy will probably tell you what you need to know. Take care

[salvatore]

If your blood tests are normal and that includes liver enzymes, then you really don't have much to worry about. The Dr. will monitor your levels periodically. If and when your alk phos and AST/ALT become high, the Dr should put you on ursodiol which is a bile acid with few side efects. Make sure you eat right and stay away from alcohol.

[Ellanvannin]

I too saw the consultant last week. He said that I was AMA and ANA positive but as my bloods and scans were o.k. he could not treat me for PBC.

He also said that my ACE was elevated but again not enough evidence on scans to prove sarcoidosis. I asked him " where does this leave me? feeling so ill. He just said " we know that you have an autoimmune illness in your body your bloods tell us that but until we get more evidence of organ damage we can not treat you.

A different consultant diagnosed me with PBC 8 years ago along with sjogrens syndrome.

I am feeling pretty confused. One day I think I am lucky that my organs are not badly effected and that I do not have to take medication another I read on the forum that everyone is taking Urso. Which Drs. are right and which are wrong.?

[Hidden]

Hello melbourne.

Well as far as I understand, you can test positive for AMAs and also have normal LFTs.

Back in 2010 I started itching and at the time was fatigued. I had blood test after blood test with LFTs that were continuing to slowly increase. I had what appeared a normal liver scan (other organs also) and then early Nov 2010 I had the AMA and also ANA blood test at same time. My AMA was positive, the ANA was negative.

Now when I presented to a doctor I was itching and also had abnormal LFTs. With the few symptons and the AMAs I was diagnosed with PBC and started urso Dec 2010. Almost 3yrs on from starting urso I am much much better than I was back then. I still itch but not like I did and fatigue long since left me. My LFTs are still what are considered abnormal but are normal for one with PBC now.

If you don't have abnormal LFTs and as you state yours are normal but you do have AMAs then it does seem unlikely that you wouldn't be started with urso due to the normal LFTs. I expect you will continue to have bloods checked and in event that they start to appear abnormal then you would be given urso.

You do sound like you have PBC but it's never really known when we start with it, some are discovered by a blood check, others like me with what appears to be the most commonest of symptons in PBC, the itch and/or fatigue. Altho' it might not be found to be wholly acceptable for someone with antibodies and being informed they have PBC and have normal LFTs in a way it does make sense to not start on urso if the bloods are normal as that does say that at present the liver is adequately coping and usually there are no symptons so you are known as asymptomatic. You might be one of the luckier ones and PBC might never take hold, it can and does happen.

It is also found that even if someone is tested for AMAs and they have a positive reading, at a later date they might then not have any present but I imagine in my case as with others on urso, if we were to be re-tested, we'd not be taken off urso due to the LFTs.

I think with you having what I call 'a heads up' now, you can start to look after yourself even better, I'd say try to abstain from alcohol if you partake (I quit after my first abnormal blood result. Never been much of a drinker so do not miss), cut out certain food additives, ie artificial sweetners and MSG. Also cut down more on fats.

Hope this has helped some.

[skywalker]

Hi Melbourne, I'm in exactly the same situation as you, I have been AMA positive plus M2 for a few years now, but my consultant only said I may have PBC, due to my liver function tests being normal.

I wouldn't say I'm asymptomatic, I itch, have aching pains in my hands and wrists, mainly on the left side, and suffer fatigue quite bad at times.

I have terrible problems with heart burn and drink gaviscon from the bottle.

I've just requested a copy of my LFT's

I hate living in no-mans land, especially reading stories about pbc and getting mixed messages!

Some people are diagnosed with just having a high AMA titre, but then I read that AMA levels have no influence on the progression of PBC!

I need to understand if I'm going to get it...... But what always comes back is "your high risk" of developing PBC but don't worry! Try and forget you have the anti-body..... ha yeah right! Just like that!! I don't think so.

I've read that ladies have got to stage two and three because they have always had normal range LFT'S????

So how can they Catergorically say that by not having elevated liver enzymes we do not have PBC!!! This is what gets to me.

I'm expecting my annual appointment soon and may consider having a biopsy

Are you in Australia ?

[melbourne]

No I am from the uk. It sucks really.. I am 30 and stuck in no mans land. I just want to know... how did u find u was possible for pbc if your liver tests are fine.. that's if u don't mind me asking?... I want a biopsy he said he doesn't want to send for one till liver changes.

[Kitsilano in reply to melbourne]

Hi melbourne I'm in the UK too and in the same position. AMA positive, no symptoms, normal liver function test, normal fibroscan, normal liver MRI.

BUT my consultant insisted on a liver biopsy which I had done on Thursday and I am waiting for the results. Still (naively perhaps) hoping it will come back negative...

[melbourne in reply to Kitsilano]

I haven't had one.. but do want to. I hope it does come back normal. . Did your doctor say u may never get pbc? Let me know if u want to how u get on. How long have u known about ama if u don't mind me asking.

[Kitsilano in reply to melbourne]

My consultant said he was "convinced" the liver biopsy would show pbc. All my other blood work has been fine, the AMA was high titre though 1:640. I found out about the AMA in April this year.

I will let you know what transpires with the biopsy - at least I will know where I stand.

[melbourne in reply to Kitsilano]

Ok... hope it isn't to long for results. .. What's a normal ama or isn't there one. I just don't get why if u are ama positive why doctor s can't tell u that it's pbc. .. strange

[melbourne]

Also was never told how high my ama was... just that it is positive and could have had it from birth... no help really.. is all your blood work ok?

[skywalker]

The AMA was found when tests were run for numbness and tingling about 3 yrs ago. I didn't get a copy of the results from last November.... They're in the post as I speak, I put in a request last week.

The AMA is the main marker for PBC..... I've been to Addenbrooks Hospital in Cambridge, They said don't worry your LFT'S are normal, and I seen a consultant in Epping last November who confirmed I had the anti-body, and wrote in the letter that it was likely that I do have PBC.... He said that if AMA is detected that PBC usually follows within 5 years!

They wont diagnose me or treat me until LFT'S show a rise in enzymes... or I could have a biopsy! They offered me one at Cambridge but I didn't feel the need then. But since 3 years ago I'm more itchy, fatigued and get terrible aches and pains, it really gets me down, I'm 48 this month but have two young lively boys 12 and 10.

I think it feels worse not really knowing! (for me anyway) It plays on my mind most days! I don't suppose that will change even if I do get a diagnosis!

I'm hoping I get my results tomorrow, can't wait to check them out!

We need more answers don't we.... request a copy of your results, we can compare then! It's your right and they can't refuse.

PS. My blood results are always normal, as was the ultra sound scan! But it's such a sneaky disease I don't trust it and I don't have much faith in the NHS doctors....

[Kitsilano]

Just to update this thread. I am AMA +ve, no symptoms at all, liver function tests all normal. But I have now officially been diagnosed on the basis of the liver biopsy. Apparently very early stage (0/1). Just getting my head round it and then I will start Urso but have been told no massive rush.

[melbourne]

Sorry what is +ve?

[Kitsilano]

It's "positive"

[Katieboychuk]

Hello,

I happened to come across your post and am in literally the exact same position. I had a positive AMA discovered on a random blood draw but everything else fine. I was just wondering how you are doing. I'm only 30 years old so very scared.

Thank you,

Katie