AMA TEST

[ranick618]

I was diagnosed in 2007 from blood work, no biopsy. I had a Mitochondrial (M2) Antibody score of 42.3. The lab has a reference interval of >24.9 for positive. Also, mu Immunoglobulin M was 320, where the interval range is 40-230. Was started on Urso right away and still take every day. All of my ultrasounds have always been normal, just fatty infiltrations. I can't stand being on the medication and have gained a lot of weight from it and have thinning hair. Last week due to my doubts my doctor and I decided to do the AMA again and it came back negative. Is this due to being on Urso all these years, or is it possible that I had a false/positive AMA in 2007? Just looking for some thoughts...

[Hidden]

Hello ranick618.

I was diagnosed with PBC Dec 2010 due to 3 factors, itching and at the time fatigue, abnormal LFTs and GGT plus it was found I had a high titre of the antimitochondria antibodies (AMAs). Started on urso Dec 2010.

My weight was about half a stone heavier than I currently am. My weight has remained stable since 2011. I put this down to a pretty active life and also the fact that later at night when I itch I spend a lot of time fidgeting throughout the night.

Apparently the AMAs can fluctuate. I've never had a recheck and my opinion is there is no point as regardless I still have PBC and it isn't going to go away unless there is a cure found.

However I do believe that PBC can slow right down for some time and in my view that is what might occur if the antibodies are proving at the time to be negative or not very many.

I do think that urso by improving the bile flow can help the liver remain performing quite well and urso is designed to try to slow down progression of PBC. I also think that any problems originally pre-urso might just start to heal after some time taking it.

I go by how I feel to be honest. I don't even bother thinking about it. I know every day I have PBC as come early evening I start to feel prickly and then itch later at night. Without the itch I'd not actually know I had PBC. I get tired sometimes in the afternoon due to broken sleep but for me fatigue doesn't seem to be with me currently.

[ranick618 in reply to Hidden]

I rarely think about it, but now my new Gastro, who I have been with the last 4 years, shares my thoughts. My LFT's have always been normal. I was not feeling right for about a year and a half, mostly due to anxiety with a lot of issues going on in my life. The only evidence of PBC would be a terrible bout of itching in 2004, lasted about 3 weeks and that was it. My dermatologist even ran bloods then and all were normal. I have always had dermatitis issues so that's what I was treated for at that time.

It is past acceptance, I go about living life. Once in awhile I will feel down about it, but it passes. I just can't stand taking pills if I really don't need to.

[Hidden in reply to ranick618]

Hello again ranick618.

Reading the last issue of Bear Facts (before the one recently received) there was an article about urso in it and it was a case of when to start a patient with diagnosed PBC on urso with regards to the patient being asymptomatic (ie no itching or other symptons and normal LFTs plus GGT).

I can't say there regards yourself but if you received a print-out of the bloods each time like I do, there is normally the normal range and any that are outside either way are usually with an exclamation mark on mine.

In my case I presented to a GP with itching early 2010 and being symptomatic once it was diagnosed PBC I started on urso.

I did read in this article that some patients with abnormal LFTs ca\n have their bloods return to normal following taking urso but that patient would still remain on the urso.

Like yourself I never wanted to have to reach for a pill packet daily as I too have never taken any meds unless deemed necessary. Until I was itching in 2010 I hadn't had a prescription since 1999.

I know myself I am not sure now if I'd stop taking the urso as I know how I felt itching back in 2010 and since the urso it has altered somewhat and more confined to just night time. I couldn't bear to have the itch 24/7 like I did throughout 2010 and though I was seeing a doctor on/off over the months I was offered no advice nor nothing and the first hospital consultation from early 2010 took 8 months and 9 to diagnosis.

[Zelda5]

You may find this interesting, palpath.com/MedicalTestPage....

It shows other ailments that have been associated with positive AMA's. it would be great if it turns out that you didn't have it after all, but there's so much contradictory info. out there that it's hard to say. Best of Luck!

[GrittyReads]

I don't want to repeat too much of what I have already said on here - so many times - but I think it would help you if you check back through my posts, as well as those by badpiglet, Keren and Kevin733 (nb Number could be wrong).

We all only have AMAs. The others are/were not diagnosed as PBC, but do have regular blood tests (lfts etc) which are normal. I was temporarily given a weird diagnosis. You might like to also follow up the various links that we have added over time, eg to research papers on this issue.

About 8 years ago I was diagnosed as having 'presymptomatic PBC' a diagnosis which does not formally exist, and which plays havoc with Insurance, as they just don't recognise it. I have recently seen one of the leading PBC specialists in the UK, and I am now diagnosed as only having AMA reactivity, which insurance companies do not find significant. I had known since 1992 that I had AMAs, and had annual lfts for years - all perfect - but was never told of their significance, nor was PBC ever mentioned, until a new-to-me GP sent me to the new consultant 8 years ago, and then the shock!

However, there are far more people who are AMA +ve than who ever go on to develop PBC, and 'yes' AMAs (there are different sub-types) can be present in other autoimmune conditions, which should be tested for.

Strictly, formally, according to both UK & European & US official medical diagnostic guidelines ... to be 'diagnosed' as having PBC you must have at least 2 out of the following 3 'diagnostic criteria' :

1 - test positive for AMAs. and/or:

2- have abnormal liver function tests, consistent with PBC, for over 6 months. and/or:

3 - have a biopsy that shows liver damage consistent with PBC.

AMAs alone are not enough for a diagnosis of PBC. However, if you are AMA +ve you will need to have annual lfts, just to keep a lookout for PBC, but that is all.

NB the major 'symptoms' of PBC, are symptoms, NOT diagnostic criteria.

You cannot be diagnosed PBC with itching and fatigue. These symptoms are indicators of PBC, but also of other liver conditions, and even other autoimmune conditions, all of which should be tested for. If you had strong symptoms plus, AMAs, lfts would be monitored closely, and maybe a biopsy done, but you are not diagnosed on symptoms alone.

I hope this helps. I would try to see a liver specialist, rather than a gastro, and if possible one who specialises in PBC. I don't know if you are in the States, the UK or elsewhere, but I'm sure plenty of people will be willing to 'private message' you with suggestions of who is good to see - I believe we are not supposed to mention consultants etc by name on these sites. NB always ask for a copy of your results and letters - in the UK this is your right.

Take care,

Gritty

[Zelda5]

This is from Pubmed also in its full text and goes into great detail about Ama testing and the types of testing used ie. Elisa vs IIF. It's very interesting, I think, and has a lot of good information.

[ranick618 in reply to Zelda5]

I didn't receive any info from you on how to read Pubmed.

[Zelda5 in reply to ranick618]

Hi ranick618,

Sorry about that, I'm brain dead sometimes, so here it is and there's a link for free full text under the summary, ncbi.nlm.nih.gov/pubmed/245...

[Kevin733]

Ranick,

Was your ALP ever tested? If so, what were the results? Also, was the IGM re-tested?

As Gritty notes below, positive AMA isn't sufficient to diagnose PBC. However, the level of AMA (or even a flip back below 25) isn't sufficient to reverse it either. In addition, you had positive AMA in the presence of elevated IGM. What are/were your ALP results, and what's your new IGM result?

To answer your question: To my understanding, No--Urso does not affect the level of AMA. I do not believe that it affects the level of IGM either. It may affect the level of ALP, but we want to know whether you had an ALP elevation to begin with. It's really about the level of liver enzymes, such as ALP, and not the level of AMA.

Hope this helps,

Kevin

[ranick618 in reply to Kevin733]

Thanks for the reply. I just pulled out all the labs I had and my ALP was never elevated. It was consistent 86-88 through the years. The only test that is sometimes elevated is the ALT. The highest reading being 44. This can be due to fatty liver which I've had for years.

This is all so confusing with so many different views and opinions. Besides the AMA being re-done recently, he did AFP, ANA IFA SCR w/REFL TITER Mitochondrial AB w/RFX , Mito/smooth muscle w/rfx and were all negative.

[Kevin733 in reply to ranick618]

Ranick, are you male or female? The reason I ask is it affects the specificity of your AMA positivity. Also, was your IGM ever re-tested?

[ranick618 in reply to Kevin733]

I am 100% female...lol. I haven't had the IGM re-tested since original dx. It was done on 4/12/2007 with a reading of 320, and being in denial I had it done again on 4/20/2007 with a reading of 328. Nothing since. Going to my doctor tomorrow morning, any advice for me to request?

[Kevin733 in reply to ranick618]

This is a real conundrum! Being female with AMA positivity in the presence of IGM elevation is certainly strongly predictive for PBC. On the other hand, you never had ALP elevation. On the other (other) hand, the Urso might be holding it down.

I would request an IGM re-test. If the IGM elevation is resolved, I would ask your doctor about taking a three to six month break from Urso and seeing whether ALP rises--with the idea that you go back on if it rises. If the IGM is still elevated, this still sounds like a PBC picture. I know that you technically don't meet the diagnostic criteria (which Gritty stated very well), but the combination of being female and having persistent IGM elevation in the presence of a positive AMA test would lead me to that conclusion.

You might also ask your doc if there is anything you can do to make the Urso more tolerable/reduce its side effects.

Interested to hear how it goes!