Just diagnosed

[Ellyne]

I just joined this group and I am needing some guidance. I had a positive AMA result, had a biopsy that suggested PBC but is in very early stage. Dr. prescribed URSO and I understand that this med. can slow down the process but can it also lower AMA test results? Thanks for any help. I am pretty overwhelmed.

Ellyne

[Hidden]

No, don’t believe AMA is impacted. Your LFT panels should normalized with urso if you are a responder.

[claygi]

AMA levels are not indicative of disease process and therefore almost irrelevant once they have been detected and determined to be positive. URSO slows down the disease process in the Intra hepatic bile ducts , which are being attacked by our own white blood cells, which see the bile ducts as “foreign”. See this article for more info on PBC.

ncbi.nlm.nih.gov/pmc/articl...

[Ballymahon2 in reply to claygi]

Thanks for the info claygi very helpful

[butterflyEi]

Hi Ellyne

Welcome to this wonderful and supportive group.

The link claygi shared is very informative and hopefully will lead you in the right direction. There are a couple of other links which may be of use to you, The PBC Foundation (free to join through the link above) has a good deal of helpful information in the member's section. Also depending on which country you are in there are other links such as the British Liver Trust or the American Liver Foundation liverfoundation.org/ There is also a Canadian organisation pbc-society.ca/

not that I am suggesting you do to much research but it does help to be aware of PBC as it is a rare/uncommon disease which is not well understood but a lot of the medical profession

I was diagnosed asymptomatic in 2006 and am fortunate to be a responder to URSO although not so fortunate as I am an "itcher". I no longer drink anything like cola or lemonade, I eat a diet rich in vegetables very little red meat no sugar and little fat.

It is overwhelming when we first get the news but once you have reached the acceptance phase you will find that you continue to live your life as before. Many stay symptom free and I hope this will be the same for you, however one mistake I made was to think that anything that was wrong with me was PBC related - this of course in not the case so if you have a problem then run it past your doctor.

best wishes

[Rosehip19]

I have been diagnosed with PBC for over 15 years, and have been taking Urso since the beginning. Last year my consultant decided to include AMA again in my annual blood tests. All the lfts were completely normal. The AMA (normal range in the low tens) was 220! Was a bit startled and asked him why this should be. He just grinned and said “It means we’re really, REALLY sure you’ve got PBC”.

[Ellyne]

Thank you everyone for responding to me. Lots of good info and advice. Just started Urso today. Thanks, again. Ellyne

[Andrei]

Morning.In my case urso also lowered the nr for Ama.After 3 months on urso my blood test got normal and Ama went from 25.7 to 20......so it is possible tha also in your case to lower the ama nr.

[Ellyne]

My AMA was reported as a titer if 1:680. I do not understand your AMA result.

[gwillistexas in reply to Ellyne]

Mine was 1:60. Too high🙁

[Ellyne]

My Liver Biopsy report did not clearly state that I have PBC. It said suggestive of...I did start Ursodiol 300 mg 3 times a day. But I am having doubts about my diagnosis. My AMA AB M2 was positive at 1:640. Biopsy report states granulomatous duct injury suggestive of PBC. There are clinical and historic features that are atypical for that disease. There is a normal ALP, an absence of keratin 7 positive cholestatic hepatocytes, only rare loss of bile ducts in portal tracts without granulomas and persistence of canal of Hering/ductular profiles. The possibility of other granulomatous mimics of PBC should reconsidered clinically, including sarcoidosis and drug/toxin induced liver injury. So, I am having trouble wrapping my head around this PBC diagnosis by my gastro. I could use some advice because I am starting to make myself crazy with this.