My sister went for a blood test and came back with positive AMA of 80. All other tests were normal.

[skippydownunder]

She went to a gastro and he said she doesn't have PBC but could develop it as she carries the gene for it. I thought a positive AMA was a diagnosis of PBC. Does anyone have normal blood tests but has been diagnosed with PBC based on the positive AMA?

[Puddles]

Hi Skippy, I think there can be a sort of pre - clinical stage before the process begins, but AMA is still positive. I came across this study

ncbi.nlm.nih.gov/pubmed/893...

which followed the progress of people with positive AMA but no other abnormalities. Most, but not all did eventually very slowly develop PBC.

Did your sister go to be tested based on your diagnosis? I asked my gastro about my sister and she just said have her LFTs checked each year, I was a bit curious as to why she wouldn't have her AMA done.

Puddles

[skippydownunder in reply to Puddles]

Yes. She went because I was diagnosed with PBC. No symptoms. She was just told to have regular blood tests. I am going to check with my gastro on Thursday and see what he thinks about no treatment with Ursofalk.

[Wendom]

Hi there I'm Ama positive since at least 2006 only got symptoms in 2011 I'm on urso but my liver functions have so far been normal was put on urso because of the upper right quadrent pain I have dry eyes and dry mouth antibodies against my thyroid too I'm afraid I was told Ama is preclinical when lfts are normal but 98% go on to develop pbc I haven't been able to tolerate alcohol vey well for about 6 years my consultant said based on Ama alone I have pbc he said a lot of consultants especially in America are not as up to date on research but that the liver is such a resilient organ that Lfts won't change until there's a bit of damage he said mine would have eventually changed urso has took away my liver pain I stopped it for a week because of acid reflux but the pain is right back so I know it's my liver there was an article in the British pbc foundation magazine by the top pbc and transplant doctor and he says Ama is a predictor of pbc even in people who are asymptomatic my consultant is a billary expert and has worked at transplant unit he said that I'm classed as symptomatic for pbc oh I also have a positive Igm blood test apparently another indicator of pbc your sister could ask for this please make sure she follows this up and doesn't get fobbed off take care x

[Kmkrutsch in reply to Wendom]

Happy to come across this forum. Have had horrible waxing and waning pain that starts under my right ribs around to the rightest side of my back. My AMA is a consistent 1:80. I have bouts of itching like mad, mostly palms and bottom of feet but times back and legs. My LFT's have been normal. Been AMA positive for 3 years along with other autoimmune antibodies at times. Was hospitalized once for 4 days because all labs were off , i was so sick . Family Doc Thought I had Sepsis . Internist at Hospital said it was an autoimmune flare up . They believe Lupus. My brain gets so jacked up at times I can't think or concentrate and I mentally do not feel like myself. How often does a positive AMA never progress ??? If anyone can help or prepare me I would greatly appreciate it.

[Hidden]

Hello skippydownunder.

Maybe your sister may never go on to develope PBC. I don't know the number of the AMA which you quoted as my hospital letter just stated 'a positively high titre' with regards to the AMAs. But I was having abnormal bloods and also had itching and fatigue back in 2010 so I got diagnosed with the AMAs and presenting ongoing symptons.

I no longer get fatigued, tired yes but that is due to some nights not being able to sleep properly due to the itching I still suffer at night.

At present from what I can gather, if your sister has tested for AMAs she'll more than likely have repeat bloods at intervals to keep a check. AMAs in people with PBC can become negative at times.

At present the only way forward in my view to knowing one has got AMAs is to have repeat bloods and meanwhile try to keep looking after oneself even better to possibly avoiding PBC ever 'coming out'. Also having the heads up now, alcohol for instance to me would be a complete no-no (was never much of a drinker prior to 2010 and diagnose that year but from the first abnormal LFT I ceased altogether. Doesn't bother me as it never bothered me prior to starting with the itch and fatigue so I do not miss it at all). Also any over-the-counter medicines/preparations and also doctor prescriptions would be a case of if not desperately needed then don't take to me. I've not taken anything since 2010 (only ever took aspirin 'til deemed bad for us (!) and then paracetamol if I was desperate) in the way of pharmaceuticals. I'm not happy about popping urso each day but my bloods have showed a good response so I continue with them.

[gizocsi]

Don't worry, there is life even after having symptoms, BUT with very bad blood tests (without AMA yet) nobody told me about importance of diet, so I think Your sister can be healthy still if she follows Peridot advice with no alcohol, I add only, that healthy fats use (in small quqntity) can be also important. I'm much better with a strict diet (and urso) Best wishes, be with Your sister!

[Wendom]

Hi sorry forgot to mention earlier a titre of 40 is considered pbc but above 25 is a positive this is England don't know if its different elsewhere the pbc foundation told me about the 40 number last year so far my results are 100 80 70 50 50 25 25 consultant said he doesn't know why number s keep changing but he said there still all positive and that's what matters don't know why they did do many Ama tests Also consultant said Ama m2 is even more definitive which I've had take care x

[rbwphd]

Hi Skippydownunder. A definitive diagnosis of PBC should include at least two of the following criteria:

(1) A positive AMA titre (over 25).

(2) Elevated alkaline phosphatase (AP) for over 6 months (over 126).

(3) Liver biopsy positive for PBC changes.

I realize that this is fairly simplistic, and that a positive AMA without the other findings sometimes can mean very early disease. The main thing is to get liver function tests (LFTs) at least every year with particular attention to rising alkaline phosphatase levels. I had a positive AMA of 62.5 a little over a year ago and was retested a month later with a level of 65. This was done after I had a few attacks of intense epigastic pain, in spite of having a cholecystectomy (gall bladder surgery) four years earlier for stones. However, my AP was normal at that time and was still normal when my LFTs were checked a few months ago. I am trained as a physician in the States and I am currently looking for a Family Medicine residency. I am not worried about my own positive AMA because of the normal AP. Since I am male and PBC is so rare in men, it may mean that I have a very mild case of the condition that may never cause illness. If there is a family history of the disease it is important to be vigilant with the LFTs, as well as any symptoms such as itching, jaundice, dry mouth (xerostoma), dry eye (xeropthalmia) and other autoimmune manifestations. There is a website (Medscape) that may be of some help (emedicine.medscape.com/arti.... It is fairly technical but it can give you enough information so you know which questions to ask your gastro doc. I hope that this helps.

Bob

[skippydownunder in reply to rbwphd]

Thanks for your reply Bob. I have been diagnosed with PBC due to all 3 reasons you listed. Will pass on this information to my sister. Hopefully she will never get to this point. Also good luck with your positive AMAs. Great to have people who are affected by these things on the ste with medical knowledge and training to share as well. Thanks.

[GrittyReads]

Dear Skippydownunder,

Thanks for your letter, which chimed a little with my experience - although I don't know how different things are between the health service here in the UK, versus where you are. Thanks also to Bob, in the States: his comments tie in with what I have recently been told (informally) by a liver consultant here in the UK.

I have tested +ve for AMA for over 20 years. Back then, all my tests, ultrasounds and examinations were completely clear and no condition was diagnosed, although I was advised to have annual LFTs. After 12 years of perfectly normal tests, I was told to stop: the wisdon then being that I would never develop PBC if I had not done so after 12 years. Thinking on that point that has obviously changed, and I was referred to a consultant 5 years ago, when the issue of +ve AMA cropped up with a new GP. The consultant did more tests, all of which were clear, however he seemed to think I will develop PBC and diagnosed me with 'pre-symptomatic PBC' [NB travel insurance tick boxes and advisors do not recognise this diagnosis]. However, all that I (still) do is to have annual LFTs taken at my GP's ... all of which have stayed clear.

The consultant I recenlty talked to agreed with the 2 out of 3 tests that Bob mentions, as being necessary criteria for a diagnosis of PBC. I've never had a liver biopsy, so my diagnosis is based on only one factor out of the 3 - although no one has ever talked about the significance of the AMA titre level, and I have no idea what mine is (see Wendom's comments). Also, no one has ever talked to me in detail about the significance of the different tests in the LFT - something I now aim to remedy.

It may seem mad, but over the last 5 years I have buried my head in the sand and have not done anything to clarify my diagnosis, despite a constant, underlying worry: a worry that most people - even my nearest and dearest - do not understand, as as far as they are concerned, I do not have anything wrong with me. I did not worry until I discovered how difficult it was becoming to get travel insurance. With the greater advent of tick box health assessment, and the inability to talk with Insurers' genuine medical advsors, I am finally coming round to being reassessed: which my GPs are willing to support. I think they realise that the question of my diagnosis and the worry it causes is actually liable to make me ill.

I do apologise to those of you with full-blown PBC if I seem to be wittering about a trivial situation. I do realise that my worries are slight compared to the devastating effects of PBC. I'm not insensitive, and do work to help raise awareness of PBC. However, my feeling of being labelled and powerless had rendered me incapable of acting and has affected other parts of my life. I may still develop PBC - in fact, investigations to re-evalutae my diagnosis may find something, but I think I would prefer that to the confusing limbo I currently experience.

My advice to anyone in a similar situation - or having any PBC-related analysis - is to push to know all details, of all blood tests. Do not ignore things as I did and educate yourself as much as possible, eg: using the help of the wonderful PBC Foundation. The consultant I recently talked to said they would also want to know family history, prevelance/history of other autoimmune conditions, and make a study of liver imaging. So, make sure that you have all the facts and that your investigations and tests are as thorough as they can be.

I think all of us may have to work to educate some of our health providers.