Could high AMA be something else?

[tnchikadee]

Hi all. So back Dec had normal physical, liver enzymes high. Jan see doc for Shingles, liver enzymes at that time went up. I noticed looking over my bloodwork that 2 weeks thevappt in Jan ast/ alt dropped to within high normal levels and ALP went from 358 to 308 on its own, but AMA high at 181. So March doc gives me urso 3 weeks later all levels normal ALP cut more than half. Had mri showed no liver/ bile damage all normal but AMA still 181. Now 6 mths later still taking urso all levels well within normal but AMA still 181. So can this AMA produce a false positive for PBC? Since my levels started dropping in their own before Urso and MRI showed nothing could I NOT have PBC even if AMA still at 181? Never had biopsy. Thanks

[Sona_akb]

Hi

MRI can not rule out histological damage.

As I know, positive AMA plus abnormal liver enzymes are indicative of PBC. AMA is highly specific and also sensitive for PBC

[tnchikadee in reply to Sona_akb]

Thank you for your reply .

[Sona_akb in reply to tnchikadee]

Sorry I didn’t intend to be pessimistic just didn’t want you to cut your Urso.

[tnchikadee in reply to Sona_akb]

No I appreciate your reply. I will not stop URSO . I feel I am lucky this seems to be caught early with no apparent damage to liver / bile. Hopeful .

[Sona_akb in reply to tnchikadee]

Yes surely you are in a very very early stage.

[Ballymahon2]

Sounds like pbc

[tnchikadee in reply to Ballymahon2]

Thank you for your reply.

[Newsroom]

I would PBC for sure

[butterflyEi]

As your AMA has not dropped are you on the right dose of URSO relative to your weight. The patient information leaflet (PIL) has a guide to help you work out the correct dose. For instance I am 68 kilos (10,5 stone) and take 1,000 mg URSOdeoxycholic acid a day. I believe the specialist like to look at blood results over the first year to see whether we are URSO responders or not.

best wishes

[tnchikadee in reply to butterflyEi]

Yes right dose for my weight. I was told ama not a gauge for any liver damage happening. Focus is more on liver enzymes and bilirubin numbers. If those look good doctor said good sign . Although he does like to check for my ama numbers.

[HealthyChik]

Hi tnchikadee,

Glad you are responding to URSO. Our cases sound similar. My liver enzymes were checked several times before my diagnosis (7/2018) and were also trending downward on their own, except for my ALP. Although it was coming down a bit on its own, it was still right at 1.5 times normal (Mine lowest on my own was 208) and I was positive for AMA so I feel like I met the diagnostic criteria for PBC. I also have no fibrosis according to my MRE. I've had a good response to URSO and my ALP was down to 89 at last check and I have no symptoms. I feel like mine was caught early🙌. I'm curious from you and others if your docs are rechecking your AMA level after diagnosis and treatment? Mine has not and just wondered if it's something I should be asking about. Best wishes😊💕

[tnchikadee in reply to HealthyChik]

Yes he has checked my ama at every blood draw. He expected it to drop some with how much my numbers of liver enzymes had dropped. Started at 308 ALP back in March now 114. He does watch it though.

[HealthyChik in reply to tnchikadee]

Thanks. I go back to my hepatologist in October and will definitely ask him to recheck. I'm not sure that it would change anything he recommends but I'd sure like to know

[Skypony]

Hi tnchikadee, I don't believe you'd necessarily expect your AMA titre to go down along with your other results so that may be a 'red herring'.

As others have said, the level of this antibody doesn't correlate to the level of disease, and quite a lot of Hepatologists won't be interested in re-testing it because they see it as binary - it's either positive or negative. I was curious about how mine was doing and asked for a re-test but didn't get it!

I've actually never heard that Urso modulates AMA production so I'm quite surprised that this was expected. Anyway, looks like things have improved a lot for you, so that's great news! Best wishes

[tnchikadee in reply to Skypony]

Thank you so much for your reply. And thank you for letting me know about ama. Next time I meet with my doc I am going to ask that why he keeps testing it.

[ninjagirlwebb in reply to tnchikadee]

I agree with Skypony. They only tested AMAs while trying to diagnose pbc. Hepatologist has not tested it since. He monitors alk phos, alt, ast, bilirubin. He doesn’t even test the ggt anymore.