Fluctuating AMA- AMA M2 (pre Pbc - not on meds)

[Hastingsgal]

Hi all, I have written before about having different results from two different hospitals on my AMA/AMA M2. The situation has developed into more bizarre situation. My AMA has been positive for 8 years that I know of. It started when I became quite ill and they did some blood tests and found that I was positive at 1:40. Over the years, this has gradually and steadily increased. Ive had severe pruritus, chronic fatigue et cetera for years but a year ago it became debilitating. I was being seen under rheumatology. I insisted they re-do the AMA test which they didn’t want to but I insisted & they agreed because they were “stuck” with my diagnosis thinking it was Sjögren’s but not typical. My AMA was 380 this time July 17.

Question one: when you have an AMA test, and it comes up positive, will your AMA M2 subtest be the same or lower or can it be much higher titre?

I was then referred To A hepatologist but that took ages on the waiting list so I went privately at the London Bridge Hospital. I Paid for full blood count plus an AMa 2 test. I was given the all clear. One month later I had my appointment at the Royal free & I was diagnosed as being “pre- PBC”. My M2 titre was 1:1200.

Question two: is it possible for AMA to go from gradually steadily increasing titre over many years to suddenly being negative?

Question three: is it possible to have a positive M2 at such a significant Titre and then suddenly be completely negative?

I challenged the London Bridge Hospital on their blood test. They agreed after many months to re-do the test which they finally did a week ago. Incidentally, the AMA M2 test was never done by them even though I paid for it. Their excuse was that the AMa was negative so there was no point in doing the M2.This time the AMA they say is positive but that the M2 was negative but they’re sending it to another one of their own in-house labs to doublecheck the blood. Personally I trust the Royal free.But I’m just wondering is it possible for M2 to fluctuate so drastically as to go one month from negative to the next month to 1200?

I know we are not doctors here but if anyone has any knowledge or experience in this situation please could you respond?

My scans were normal but the first fibroscan was 4.5 and within a month it was 5.5. Does this inIndicate anything? I’m now 8.5 months on & just wondering what my fibroscan would show now.

I’ve had abnormal LFTs album and AST et cetera in the past over one year in which I was perhaps enjoying myself way too much.

My diet has been Impeccable for the last couple years and has been extremely good most my life. I have stopped drinking completely because I now have corrosive oesophagitis and corrosive duoditus.

Question four: Are gastric issues related to PBC? I have major problems. And have been put on omeprazole which I understand is not good for the liver.

I have severe Sicca syndrome, Eyes stage four. They are so severe that they’ve inserted punctal plugs into the tear ducts to try to keep my eyes moist. So far all tests for Sjogren’s syndrome have been negative. My understanding is this is very closely related to PBC as well.

Question five: why would I have all of the symptoms when all my blood test are normal in regards to PBC except for my M2 which is high. I feel like I am in nowhere land. It’s so hard to explain to anyone. I do not have a clear diagnosis yet because my LFTs are fine. And I feel a bit of a fraud on the site, and intruder looking at things that may not even be relevant to me. They have ruled out any other condition that would be associated with the positive M2.

It’s terribly lonely. Nobody understands. It’s impossible for me to speak to anyone about it because people do not get it. A close friend has cancer and people get that. People can see it. People know about chemotherapy and the side-effects. People talk about it openly. people see me out looking normal dancing my socks off, cycling up pills et cetera and think I am perfectly fine. I’ve cycled my whole life and I’ll be dammed if I’m going to give it up. But I pay for it, but of course no one sees that. I just disappear When I’m too unwell. Sometimes I Consider just having a big blowout eating all the pizza I want,Drinking all the booze I want et cetera just to push the limits into getting a diagnosis. I know that sounds mad but it’s so frustrating being in nowhere land.

Kind regards, amy

[Ellyne]

In my limited experience my understanding is that AMA M2 is the blood work for PBC. If that came back at 1200 then you will see what a repeat shows and the dr will make a determination. Have you been recommended for ursa meds?

[Hastingsgal in reply to Ellyne]

No drugs yet. It's a wait n see if LFT's change as they are in normal range. I went to the London Bridge Hospital specifically to get M2 test and fibroscan. They did everything including coeliac because of the itching & chronic fatigue. That was normal. My understanding is Doctors do an AMA test first & if positive they might ignore it like my GP's did or refer other sub tests. None of my Doctors would do an M2 so I had to go privately. And indeed it was a high titre. Obviously, I do not want to be on drugs if not needed but the itching & fatigue is ruining my life. Steroids help w itching but obviously DO NOT want to be on them. Ive had skin biopsy done for the itching but it just showed 'inflammation" and evidence of scratching. They can give no reason for the itching but the dermatologist said this could mean it is related to the PBC.

[Hastingsgal in reply to Hastingsgal]

let me correct myself! It was high at the Royal Free which was on the NHS. The London Bridge got a negative on the AMA so didn't even do an M2. But their lab did something wrong because Ive always been AMA positive clearly increasing every time I had another test. And now they retested because of the positive at Royal Free & the AMA was positive but M2 negative but even they don't trust their result now so its being looked at again. I would never recommend London Bridge Hospital to anyone. Thank you so much for replying on Easter day! Im so worn down by this. I know you've all been there!

[Ellyne in reply to Hastingsgal]

Enjoy the holiday!

[ninjagirlwebb]

The fibroscan may indicate a fatty liver. It is not a bad score that you should be overly concerned.

[ninjagirlwebb in reply to ninjagirlwebb]

Here’s the research on this:

Liver stiffness was measured by FS (Echosens, Paris, France) as described recently in detail [18]. The tip of the probe transducer was placed on the skin between the rib bones of the patient and the level of the right lobe of the liver. The measurement depth was between 25 and 65mm below the skin surface. Ten measurements were performed with success rates of at least 60%. The results were expressed in kilopascals [kPa]. The median value was taken as representative. Based on previous studies [2] and a recent meta-analysis [9], cut-off values of 8.0 and 12.5kPa were considered to be optimal for detecting F3 and F4 fibrosis stages, respectively. Since liver stiffness values ranging from 2.4 to 5.5 are considered as normal [2], a cut-off value of <5.5kPa was considered as normal although no large F0 validated control groups have been studied so far.

natap.org/2010/HCV/012010_0...

[gwillistexas in reply to ninjagirlwebb]

Does your dr not do fibroscans?

[Hastingsgal in reply to gwillistexas]

Yes. "the first fibroscan was 4.5 and within a month it was 5.5. Does this inIndicate anything? I’m now 8.5 months on & just wondering what my fibroscan would show now." It's just that it jumped from 4.5 to 5.5 in one month ages ago...so it's got me wondering how it might be 8.5 month on. My main question is to do with fluctuating AMA and AMA M2. Thank You

[gwillistexas in reply to Hastingsgal]

Hastingsgal...not sure. I’m not aware of many, in fact very few, whose dr has ran second AMA M2. My understanding is once the antibodies are there, they don’t go away.

[Hastingsgal in reply to gwillistexas]

That's what I thought but the London Bridge Hospital is telling me they can fluctuate. But surely not to "negative". Of course they would say this because their test was negative when the Royal Free was high positive only a month later. Something went wrong in their lab and they are trying to cover up I think.

[gwillistexas in reply to Hastingsgal]

Possibly. You’ll get it figured out, hopefully 😊 let us know.

[Hastingsgal in reply to ninjagirlwebb]

It's just that it jumped from 4.5 to 5.5 in one month ages ago...so it's got me wondering how it might be 8.5 month on (now). It appears everything escalated suddenly in the last year. My AMA was steadily and slowly increasing but then wham! My M2 was at 1200. My main question is to do with fluctuating AMA and AMA M2. Thank You for the info though. Happy Easter!

[ninjagirlwebb in reply to Hastingsgal]

Sure no problem. Sorry you are going through all this chaos. All the best to you. Happy Easter!

[GrittyReads]

Please contact the ' PBC Foundation', who host this site - link at the top of the page to their website, where you will find phone and email details, to talk to their lovely, trained advisors.

Simply, the presence of AMAs, even AMA-M2 is not enough - on it's own - for a diagnosis of PBC. Also, the level of AMA-M2 is not significant - my level is high, and I do not have PBC (yet, I may still develop it). About 10% of the UK population (according to blood donor statistics) just 'have' AMAs, and very few of these go one to develop PBC.

To officially/formally diagnose PBC, there need to be at least 2 out of 3 of the diagnostic tests positive. (NB symptoms: such as itching, joint pain, and fatigue, are common in PBC, but they are not enough (alone) for a diagnosis, as they are also typical of other liver, and other autoimmune, condtions.)

The following tests have to be used to formally test for PBC.

1 - the presence of AMAs (AMA-M2)

2 - sustained abnormal levels, of certain liver function chemicals, when liver function (blood) tests are done. The raised chemicals that give concern are usually ALP, GGT, and possibly ALT and or AST.

3 - If AMAs are absent, but blood tests suggest PBC (and especially if there are symptoms) then the 3rd diagnostic test is a liver biopsy, to see if there is damage to the microscopic biliary tubules of the liver. (A fibroscan is now often now done instead, or at first.0

NB You should also be given a wide range of tests for other liver and immune conditions.

If you contact the 'PBC F' they will point you to their online document, which summarise the recent 'official/formal' agreement made by all liver/PBC experts. this is the code that should be being followed by all UK health specialists, particularly liver/gastros and PBC specialists, for the diagnosis of PBC.

Sorry it's so formal, but this is what was passed on to all members of the 'PBC Foundation'. Try not to worry: worry and stress are the worst thing for any condition, especially autoimmune ones: so, have fun, do things you love, enjoy yourself and try not to dwell on this. PBC does not have to affect your life, and is nowhere near as hard to deal with as it used to be ... plus, you may not have it. Contact the PBC F, get the facts, and make sure your Drs are following them.

I hope this helps, take care,

Gritty.

[Hastingsgal in reply to GrittyReads]

Thanks Gritty. Appreciate the response. I’ve read a lot so knew the above already. I’m just trying to find out if the AMA/AMA M2 fluctuate between positive & negative because I can not find anything on the net about this. My titre at 1200 is in the high range according to what I’ve read online. But high, low doesn’t really matter, a positive is a positive. I have SEVERE symptoms. I can hardly see from the severe DED. I itch like hell. They have Already ruled out any other conditions related to the positive M2 test. I’m not fretting over developing the condition fully, I’m ok with that, not happy about it but ok. I have been told already my chances of getting full blown PBC, which is very likely. I have been trying to find out what’s wrong with me for a year & half. I have contacted The Pbc Foundation on many occasions but no one has ever got back to me. Will try again. Kind regards, Amy

[Skypony]

Hi Amy, just came across your post and helpful replies from a week ago, and I might not be able to add much, but..

Your Q1, I believe the AMA M2 would resemble the overall AMA unless you had more than one sub-type.

Q2 & 3 Apparently not, according to my NHS Hepatologist, whom I once asked.

Fibroscans - your results were in normal range (great!) and variations of that small degree are inherent in the technology.

Q4 I don't know, but your "major problems" should be investigated separately if they haven't been already. When I received a diagnosis of IBS and adjusted my diet, I had a 50% improvement in symptoms.

Q5 If you're struggling with pruritus that affects your quality of life, whatever the cause, this should be treated. Keep trying until you've been heard.

Even though your tests indicate a healthy liver atm you should get an annual blood test. Keep dancing and cycling but don't drink. Explain to your friends until they understand; you might be understating your struggles because you feel a bit confused or lack a firm diagnosis.

There's no need to feel alone; I'm sure others on this site have an uncertain pre-PBC or liver disease status, or unexplained symptoms. All are welcome!

Best wishes

[Hastingsgal in reply to Skypony]

Thank you Skypony!! This is very useful information for me. I had the London Bridge Hospital redo their blood tests since even the AMA was negative & I’ve been positive AMA for years. This time it came back positive higher than its ever been, more than double what it was 8 months ago. The M2 was negative so they are sending it off to Kings College for a retest as I’ve already had a high titre at Royal Free. Obviously something is wrong in their lab. So waiting for M2 to come back. I’m on very strict diet now & stopped drinking 20 January with only a few drinks during this time. I do get checked for everything else. Doctors are stumped. They were so sure I had Sjogrens but the lip biopsy was negative from my local hospital. I’ve been referred to Eastman dental hospital who are researching Sjogrens & they said my first biopsy was not done correctly. The scar was in the wrong place & massive for what they expect to see. My local hospital is terrible. In special measures.

Thank you so much for your concise message. Very helpful.

😊

[Hastingsgal in reply to Skypony]

Found this: ncbi.nlm.nih.gov/pmc/articl...

[Skypony in reply to Hastingsgal]

Thanks for link which I hadn't read. This and other studies show how complex autoimmunity is. It also suggests a more detailed AI assay might better define yours and others' uncertain status, since AMAs are not the only indicator. It's possible to order and pay for blood tests privately.

[Skypony in reply to Skypony]

Of course you've had unfortunate experience with this, but I've had good ones which i've found empowering. I looked up private blood tests online which were always associated with a private GP appointment. I specified what I wanted tested and this seemed to work fine and wasn't too expensive.