AMA negative

[mamma261]

Hello, finally switched doctors to a hepatologist, he did blood work AMA is negative Alk phos is 391 other liver lvls slightly elevated , had a fibroscan done waiting on results. Diagnosed PBC about 1 1/2 yrs ago is it common to have PBC and AMA be negative?

[Ballymahon2]

Yes i believe so

[Hidden]

It is not common; positive AMA is consistent with PBC. But there is a small population of PBCers who are AMA negative.

Your hepatologist will want to bring that Alk phos # down. My hepatologist mentioned to me while alk phos is higher than the general population in PBCers, it should be managed to be < 200.

Are you on urso? That should take it down if you are a responder.

Hope this helps.

[MaireO]

Hello, I am also AMA negative, with raised lft's mainly alk phosphate and bilirubin. I've been told I have advanced fibrosis based on my fibroscan. my consultant has told me I have a variant of the disease due to the negative AMA. Anyway I see a new hepatologist in January to delve deeper to get a definitive answer. I'm under investigation for past 10+ years. I have been taking urso 1000mg daily for past 5 years or thereabouts . Will keep you posted after my appointment

[mamma261]

thank you for the replies, I am on urso 1200 mg daily and also ocaliva 10 mg , I am scheduled for an endoscopy end of january. One of my biggest problems seems to be my liver keeps getting more enlarged .

[KevinHall10_ in reply to mamma261]

Just curious, what stage are u in?

[mamma261 in reply to KevinHall10_]

not sure what stage I am in, my previous doctor never said anything about stages nor did he order any of the test my hepotologist has such as fibroscan and different blood work so hopefully with this doctor I will get better answers. these were my lab results

Total Protein8.8 g/dL6.4 - 8.3 g/dL

Alb4.4 g/dL3.5 - 5.2 g/dL

Alkaline Phosphatase391 U/L 34-104

ALT40 U/L0 -normal range- 32 U/L

AST37 U/L0 - normal range-31 U/L

Total Bilirubin0.5 mg/dLnormal range- 0.0 - 1.2 mg/dL

Bilirubin, Direct0.3 mg/dLnormal range- 0.0 - 0.3 mg/dL

Bilirubin, Indirect0.2 mg/dLnormal range- 0.0 - 1.0 mg/dL

[Ballymahon2]

Are you on urso that should help bring levels down i have just started urso but i noticed my levels came down before i started urso i have made lifestyle changes no alcohol low fat diet so i think that helps i wont know until i have blood tests in new year if they have come down even more on urso i am ama positive m2 negative it all gets very confusing

[GrittyReads]

As ncgirl rightly says, it is rare for people to have PBC and yet be AMA negative ... but it is the case for about 5% of the people with PBC. In such a case (in the UK) you would be given a liver biopsy as the 3rd diagnostic test for PBC. Fibroscans seem to be being used more in the US, but a recent document on diagnosis in the UK still stresses a liver biopsy as the gold standard diagnostic test, especially when liver function and bloods are abnormal in ways typical of PBC, but AMA is -ve. I would also expect you to be checked for all other liver conditions, and for other autoimmune conditions. Also, ask for your vitamin and mineral levels to be checked.

Take care, hope this helps.

[Hidden in reply to GrittyReads]

I also read that in US, a liver biopsy is still considered the gold standard for diagnosis.

[gwillistexas in reply to Hidden]

I think that depends on the dr.

[Hidden in reply to gwillistexas]

Fibroscans are still not all that common in the US.

[gwillistexas in reply to Hidden]

My GI prefers it & that’s good by me.

[Hidden in reply to gwillistexas]

I have to ask my hepatologist about it. He never once mentioned fibroscan to me. I did 2 sonograms thus far & 1 biopsy.

[ETW1]

I was diagnosed in October and am ama m2 positive, on urso. Also having a fibroscan in January.

[gwillistexas in reply to ETW1]

👍and are you in the States?

[ETW1 in reply to gwillistexas]

Hi..no im in the uk.

[gwillistexas in reply to ETW1]

I believe it was first introduced in Europe & is now here in the States. It is used to give overall assessment of the liver & is used to monitor how well our meds are working. I think it will gain ground over biopsies. Gives more accurate information.

[ETW1 in reply to gwillistexas]

I'm interested to find out what information it will show. I have only ever seen my hepatologist once at my diagnosis so know very little. Could you please tell me is it common to have pain in right hand side of torso below the ribs? I have had this for about a month, I'm not in agony but it is painful. I called my Dr's office, but his secretary said he wasn't concerned, and if it got bad to go to emergency at the hospital.

[gwillistexas in reply to ETW1]

I’ll msg you