New to this forum. AMA test was positive.

[mike932]

Hi everyone. My name is Mike. I am 47 years old. Three months I got my first AMA test and I tested 38.7 which is positive. I have no symptoms and all my other labs are great. I repeated AMA last week and the results were 24.3 which means equivocal which means results are unsure. I also had a liver ultrasound which shows a slightly fatty liver. My doc said I can do a liver biopsy or I can just redo labs 3 months from now. What should I do? And how worried should I be?

[mike932]

Also, is it helpful to take URSO even though I do not have symptoms?

[iagra]

I wouldn't take Urso, unless you are formally diagnosed with PBC. Remember, PBC is a very slow progressing disease. Do more tests in 3 months. However, AMA is not likely to become normal. It's an autoimmune system marker. If your doctor recommends liver biopsy, don't fear it. I had it done, no big deal. Most important, don't worry yourself. PBC (if you even have it) is a very slow moving train, and you are not going to be late for anything. I took my time, before I started on Urso, after I was diagnosed. My LFTs improved on Urso.

Stay positive. Even if you have PBC, it's not the end of the world. A lot of us live completely normal lives, busy with work, children, leaving little or no time to think about PBC.

All the best to you!

[Skypony]

Hi Mike, welcome to the forum!

If your LFTs + GGT are normal and you have no symptoms, at the moment it doesn't look like you have much to worry about from the PBC point of view. I know little about fatty liver, sorry. A firm diagnosis of PBC isn't usually given on the basis of positive AMA alone, but you should be monitored on an ongoing basis. Repeating tests in 3 months as your doctor suggests seems a good plan. Let us know how you get on. Best wishes.

[Michiganpbc]

I would get the liver biopsy, that way you will know for sure, I had one it wasn't bad at all and in PBC the sooner you start URSO the better. Let us know along your journey how you are doing I have PBC stage 2 diagnosed by AMA positive and liver biopsy , responding to URSO thankfully.

[Hidden]

Hi Mike. Where are you based? I'm in the uk and 40 is the lowest positive but I think 180 is the accepted value for diagnosing. I'm not sure how that correlates where you are? I've had all sorts of numbers. Currently 360. Mine have gone from 180 to 40 before not taking any meds at all. All my other blood tests are normal. I have severe fatigue, constant itch, severe driving eye, mouth & skin, waiting to see the hepatologist. Positive AMA can be a marker for other autoimmune disease. I know how worrying it is. I freaked recently when told I was positive & then started logging in here and much more patient with things especially as my lfts & other bloods are normal. I went through all my old blood work & found I tested positive 180 titre 7 years ago & no one was concerned at all! Not sure why!

[GrittyReads in reply to Hidden]

My understanding is that at least 2 diagnostic criteria have to be satisfied, for a 'formal' diagnosis of PBC, even if AMA is high. (See my post to Mike). Also, there are different sub-types of AMA, that code for other autoimmune conditions, but it is AMA-M2 that is linked to PBC.

[mike932]

Thanks everyone. I live in California. I am going to go ahead and request biopsy. Can it be done without sedation? Do I have to have a friend drive me home?

[4pjx__]

You should have a friend drive you home. I had a liver biopsy a few weeks ago. They gave me something to help me relax. It wasn't a big deal at all. Then you have to lay on your right side for a few hours before they let you go home. JUst for reference, I live in Colorado.

-Good luck

-Pam

[LindyRich]

Hi Mike

No need for worry as this stage.

Personally I would watch my diet. Clean it up if needed and redo labs in 3 months.

As all other labs are ok I would wait. Biopsy is invasive and can be inconclusive so at this stage not a necessary procedure.

Bear in mind none of us are doctors on here so what we say is not medical opinion just our own.

[mike932 in reply to LindyRich]

Thanks Lindy. I figure I have 2 reasons to get biopsy..... positive AMA and fatty liver.

[LindyRich in reply to mike932]

Mike

Have you joined the PBC Foundation? Link at the top of the page. It is in the UK but has many members overseas. The compendium you can download is full of upto date information.

As far as I am aware fatty liver is not a symptom of PBC.

How experienced is your Doctor in diagnosing/treating PBC?

Do you have "the itch". What is your diet like? Are you fatigued?

If it turns out you do have PBC, 3 months are not going to make much difference. As has already been said it is a slow progressing disease which the vast majority of us will die WITH not of.

Its your body it's your call.

[bobbycat in reply to LindyRich]

If it helps I had PBC for 24 years before it progressed to cirrhosis which of course is not ideal life wise, however it was a long time coming and as treatments progresses so does the outlook.

[bobbycat in reply to mike932]

Hi there...If you dont fancy a biopsy then a fibroscan is also given here in the UK. Sure it is in the States, It was very easy and quick, just like an ultrasound. My consultant said it was the best indicator and less obstrusive, however by the time I had it I was at stage 4 which is PBC - cirrhosis so maybe it was best just for that. Good luck.

[LindyRich in reply to bobbycat]

I agree about the fibroscan Bobycat. Well said.

Sorry it was stage 4 for you though.

[bobbycat in reply to LindyRich]

Thanks LindyRich it was a shock as I had a varise bleed which was quite heavy. Anyway I have tablets that help and regular endoscopies and treatment so thats a great help. Feel OK right now!

[mike932 in reply to bobbycat]

I am getting biopsy at Veterans Administration hospital so I guess fibroscan is not offered here