AMA titer is reversing/declining?

Hi, I'm 33 years old and I have stage 1 PBC. I've been on 900 mg of Urso every day for the past 5 months. My Alkaline Phosphatase is now back in a normal range, so the Urso is working, thankfully. Four years ago, my GI doctor discovered the anti mitochondrial antibodies in my blood. At the time, the titer was around 37. Throughout the last four years, it has slowly increased to 78. Then I had a physical last week, and my bloodwork says that my AMA's (antimotichondrial antibodies) are down to 51.2. I am baffled- is this normal? I thought that they only increased over time?

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  • Hello Pnt1409.

    I had what was called 'a high titre' of the antibodies (AMAs) at diagnosis back in Dec 2010 when I was aged 46. This gave me a diagnosis as I had gone to see my GP 9mths prior with itching and at the time fatigue. Was found I had abnormal LFTs (but not so abnormal figurewise) and when I went to the hospital the doctor did the GGT blood test and that was abnormal too as can be expected with a liver problem.

    I have no idea what figure of AMAs I had. I got a copy of the letter from my GP that he got from the hospital consultant who diagnosed and handed me over to the GP for him to tell me I had PBC and prescribe urso and the dosage and it did not give a figure of AMAs.

    My theory with the AMAs as I have found from some that at another time of checking there has been none present that they can fluctuate and to me that means that at the time the PBC is slowing down. I think when we have a lot of them it more than likely could mean that the PBC is still chugging along. This is my theory anyway.

    Given they are antibodies that we are manufacturing I suppose at times it figures that our immune system is dealing with them so the numbers would probably fluctuate.

    I'd be interested in finding out if my theory could be feasible by asking a doctor's point of view but at present I am not under any hospital consultant as a year following my diagnosis I asked to be discharged back to the GP as I was doing so well and I still am over 3 years on. I was discharged from the hospital by agreement with the consultant that if needs be in the future I would be referred back but so far so good. I am actually glad I chose this as to me the last 3 years of trekking to the hospital would have proved pretty fruitless. My bloods are better than they were last time I had been to the hospital and unless I feel any different I will continue to have the bloods at the GP surgery and keep picking up the urso.

    I know in the early days of urso I got an astounding result within 3mths of starting on urso as I did get a good results at the 6mths mark on urso but then over the last 3yrs my bloods went down at the next check and then up a bit next time and I'd make a wavy line on a graph with them but it seems that for me at a certain time in the year they climb a bit but nothing significant and then they drop again at another. They have come down slowly though and are obviously much much better than they were at diagnosis. The itch has improved somewhat and even though I only get it at night it isn't as bad as it was back in 2010 pre-diagnosis. Fatigue left me sometime during 2011 and these days I just get tired due to broken sleep at night if I have a night where the itch is more prevalent.

    Out of interest pre-diagnosis I had a final LFT done at the GP surgery before I saw the hospital consultant. This was August 2010 when I last saw my GP and the next time was beginning November 2010 I saw hospital consultant for the first time. I got print-out of the bloods at diagnosis and noticed that August 2010 the bloods were still on a slight climb as they had been throughout 2010 but from August 2010 until November 2010 there was a drastic drop naturally. So in my view it is possible that the bloods can alter of their own accord without urso. I can't say it was the AMAs as that day at the hospital despite a good drop in the LFTs I was said to a high titre of AMAs present.

    I find PBC quuite baffling at times.

  • My understanding is that even the experts still do not fully know the exact relationship between the anti-mitochondrial antibodies and the development and progression of PBC. A small percentage of people develop PBC even though they do not have AMAs, while some people with AMAs do not develop PBC.

    As Peridot hypothesises, it may be that our body can fight back and reduce the level of AMAs - or reduce their production - but I'm not convinced that this is a firmly established medical fact, so don't want to give an opinion.

    However, it is wonderful that Urso has reduced your ALP, so the situation is very good. I would celebrate, and try to not worry too much about the why and wherefore.

    Why not chat to the PBC Foundation advisors [link at the tope of this page], they may know more of recent findings, and will be able to give you the facts if they are known. Meanwhile, keep on looking after yourself, and do anything that helps you to relax and enjoy life - don't let the AMAs be a new worry.

    Treat yourself [while, of course, maintaining sensible exercise and diet ;-)

    Take care.

  • Ama fluctuates with hormonal levels. the titer is not predictive of outcome.

  • Interesting. Thank you! What hormones, and how do you know this? Where did you find out?? I do so want to know, please post links.

    I should keep up more than I do, I mean to read more (even thoroughly reading the links I've already been given would be a good idea ...) and to search out more and more, but life - and far more personally exciting and rewarding research - takes over, and I slump back into 'ostrich-mode'.

    Thanks Kevin, all gems gratefully received!

  • Hello Kevin733.

    Now I don't understand. Given mitochondria are known as energy cells and the antibodies that can be found present in PBC as in the anti-mitochondria antibodies, I somehow dont' think it has anything to do with hormone levels.

    I did post on here just prior to late Dec after buying a book on the body for a child. I did find it fascinating myself and it mentioned what the mitochondria cells were. As I recall they are more prevalent within the liver but present in other organs also.

    Though I might not be right, if these cells are known as energy cells I think it is due to this that the fatigue comes into being.

    As antibodies go they are protein in origin and are for fighting viruses and bacteria. This is where my theory comes into being that they are fluctuating due to our own immune system maybe destroying them hence the varying levels.

    I have to say I've never had mine checked more than once. I was tested just prior to being diagnosed and this is how I was informed I had PBC, these and abnormal LFTs and GGT plus itching and fatigue. I have no desire to have a re-check of the AMAs as I think it wouldn't make any difference.

    I try to steer clear of the hormonal route for PBC due to the fact that because a small percentage of males can develop PBC (vice-versa with PSC) though it is said both sexes can have same hormones, one obviously has more of one than the other.

  • "Neither AMA status nor AMA titer has been shown to be correlated with prognosis:" jml2012.indexcopernicus.com...

    This is a meta-analysis of many other studies. The article also states that those with AMA positivity and normal serological tests, and no symptoms, are likely to later develop PBC. However, its only citation for this claim is to here: ncbi.nlm.nih.gov/pubmed/893... In that study, 24 of 29 such later had findings consistent with PBC. However, 28 of the 29 members of the study were female. AMA prevalence is identical in males and females, but PBC prevalence is not. From this it follows that AMA as a predictor of PBC is less valuable in males than females. Even in females, as you've noted before, AMA prevalence is much higher than PBC prevalence.

    The fact that AMA titer isn't predictive of prognosis is buttressed by the fact that AMA-negative PBC and AMA-positive PBC have similar outcomes, on average.

    On the relation of hormone levels to AMA titer, I don't have a specific source, but I've read or been told this many times. In any case, the relation of hormone levels to antibody levels is well-established in general. Here's a New York Times article on thyroid diseases:

    nytimes.com/health/guides/d...

    The article talks about the role of TSH and and TRH (which are hormones) being too high or too low, in stimulating a T-cell autoantibodies. A similar process underlies most autoimmune diseases.

    Finally, there's the fact that the great majority of PBC cases occur in women between the ages of 30 and 60, which is typically a time of significant hormonal change (menopause).

    Hope this is helpful!

  • Sure it will be. Thanks!!

    I've logged the links, and will read asap.

    I only know the 1996 one ... very small sample ... and I would love to know how and where they found their AMA but (as yet) not PBC people ...

    Thanks again, take care.

    Gxx

  • GrittyReads, there is also the famous Italian serological study, where they found AMA positive people by literally sampling the blood bank. Much larger sample size (n = 1500). Strikingly, that study showed no significant difference in AMA positivity among males and females (each about 0.7%). In fact, males, who accounted for a minority of the sample, accounted for a majority (5 of 9) AMA positive findings. The 9 AMA positive individuals were followed up upon for additional blood samples, but not biopsy. While all remained AMA positive, only 1 (a 73 year old female) of them had an ELISA pattern consistent with PBC.

  • I don't know that one, but a liver consultant did tell me (informally) that based on blood donor tests 0.5% of the healthy population have AMAs (no figures on sex ratio, though). So that's close.

    Do you have a link to that research at all please? I do like to have this stuff to hand when people tell me that if I'm AMA+ve, then I should be taking Urso, even after 23 years of perfect lfts and no symptoms.

    Hope you are doing fine.

    Gx

  • If you google "characterization of anti mitochondrial antibodies in healthy adults" it's the first link. 0.5% overall, 0.7% for males.

  • Thank you!!

    You are a star. I'm so lazy, I should devote more time, search more carefully, but most of the time I try to forget my whole AMA/PBC conflict: apart from when I talk to some of the people in Travel Insurance ...

    Some of the things they say are beyond belief. I'm trying to have my 'bogus' diagnosis over turned, as so many people who are just AMA +ve just have to declare blood tests, while I have to explain the diagnosis, then answer as if I do have PBC.

    Thanks again ... if ever I can help in any way.

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