Just diagnosed: I just joined this group and... - PBC Foundation

PBC Foundation

9,383 members7,978 posts

Just diagnosed

Ellyne profile image
10 Replies

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

Written by
Ellyne profile image
Ellyne
To view profiles and participate in discussions please or .
Read more about...
10 Replies

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

claygi profile image
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 profile image
Ballymahon2 in reply to claygi

Thanks for the info claygi very helpful

butterflyEi profile image
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 profile image
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 profile image
Ellyne

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

Andrei profile image
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 profile image
Ellyne

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

gwillistexas profile image
gwillistexas in reply to Ellyne

Mine was 1:60. Too high🙁

Ellyne profile image
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.

You may also like...

Just diagnosed with PBC

found to test positive for AMA. Was prescribed Urso 300 mg x 3 a day. Just curious as to what stage...

Just been diagnosed with PBC

blood test in May this year and after 8 blood tests (all with LFTs abnormalities), positive AMA and...

Just diagnosed with PBC

that tests conclude I have pbc. Shocked was an understatement. He said I need to have biopsy to...

Just diagnosed and scared.

series of tests and found that my liver enzymes were very high and I was again had a positive ANA...

Just recently diagnosed with PBC

disagree with that. Has anyone had all these symptoms and has the Urso and diet changes helped? I...