I'm new-+AMA, no symptoms, Urso?: So, I've... - PBC Foundation

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I'm new-+AMA, no symptoms, Urso?

Bobrummel217 profile image
3 Replies

So, I've been reading and trying to search for people like me, but I thought maybe it would be easier if I just posted.

I'm new here! HI!

My story started in September 2017. I had routine bloodwork done. My ALT was 32(normal <29). My cholesterol tests were also slightly elevated. I was getting a virus at that time.

Retested 1 month later and AST was now high at 38 (normal <30) and AST was now 58. I told the dr. that I had taken antibiotics between the tests, but I was sent for ultrasound anyway.

Had ultrasound with showed a small nodule. So, I was sent to Gastroenterologist.

GI doctor sent me to MRI and retested labs again in December. That blood came back normal AST, ALT, high ferritin (648, normal is < 150) and M2 was 26.6(normal <20). MRI showed hemangioma. Doctor said that my previously elevated AST and ALT could have been due to virus and antibiotics.

So, had more blood tests in January. They did not retest the ferritin. M2 was now 58. Hemochromatosis test was negative.

So, doctor wants to put me on Urso, but with what I've read, I don't know if I want to or need to take it.

Is there harm in taking Urso before you should any symptoms or elevated tests other than high AMA?

Thanks for reading.

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Bobrummel217
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Ballymahon2 profile image
Ballymahon2

I am on urso have no symptoms high lfts ama positive m2 negative diagnosed in oct urso is ok dont have any side effects i attend a hepatologist

butterflyEi profile image
butterflyEi

Hi Bobrummel217

Hello and welcome to the group. There are a great bunch of people on here who will no doubt come along soon and give you further information from personal experiences but in the meantime............/

If you take a look at the following link I hope it will help to clear things up for you.

britishlivertrust.org.uk/li...

also in the Diagnostic Tools section of the PBC Foundation web site (free to join and the hosts of this forum) this page may give you further insight

pbcfoundation.org.uk/health...

For myself I was diagnosed as being asymptomatic in 2004 which basically means I was lucky to be caught at the very beginning of PBC. At that time a biopsy was the norm but I believe that today a biopsy is not always needed only to determine if there is an overlap with another autoimmune disease. In my opinion for those of us able to tolerate Ursodeoxycholic acid it is best to start it as soon as possible. For those non responders to URSO there is now Obetocholic Acid (Ocaliva) which has been approved in several countries for use in reducing the effect of PBC in patients. Currently there is no cure but a lot of studies ongoing.

best wishes

GrittyReads profile image
GrittyReads

I have high AMAs-M2, but nothing else, no symptoms, and my liver functions tests and all other bloods are, all, always normal . The AMAs were spotted in 1992 (I may have had them all my life, some people just do) and I was checked out thoroughly - and have been several times since - but still no signs or symptoms of PBC, and I'm not diagnosed as having PBC.

For a diagnosis of PBC you need:

(1) AMAs-M2, and:

(2) abnormal bloods/lfts that are typical of PBC, over a period of time.

The only other test if one of these is absent is to have a liver biopsy.

Some people just have AMAs (about 10%).

My PBC consultant- one of the leading PBC specialists in the UK - said he would not give me Urso, unless I ever truly develop full PBC, which after all this time he thinks unlikely. However, I still have lfts checked every year. .

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