Highly positive AMA turning up now as Negative?

[Q8Cooper]

Hi All,

Early on when first diagnosed with PBC I had a negative AMA which confused my doctor. Within a month or so I had my labs again in a few weeks and I was highly positive. I have been AMA positive for six years. But now, unexpectedly I am AMA negative. Does anyone have any idea how this happened? Has anyone else gone from a positive AMA to a negative AMA?

Kathy in Colorado

[donna01]

I myself have never heard of this, but maybe you've had a miracle? May I ask, how are your liver enzymes?

[Q8Cooper in reply to donna01]

My Liver enzymes ALk is down from the low 400's to the low 200's. Slight improvement in everything else. Doc tells me some one must be making a mistake. Ocaliva could have reversed the AMA but if it did, it took a year. I was doing a lot of anti- inflammatory nutrition, rest, minimizing stress, and hot spring soaks to sort of sweat out toxins through the skin for 30 days prior. I will journaling and see why I have twice gone from a positive to a negative AMA. One test error, maybe, but two lab errors has got my interest peaked.

Kathy in Colorado

[Maur22 in reply to Q8Cooper]

So your fatigue must be cured?

[YADILURO]

I HAVE . AND MY DR. SAID IT CAN BECOME NEGATIVE WITH THE URSO. BUT THAT DOESNT MEAN YOUR CURED OF PBC.

[gwillistexas in reply to YADILURO]

Hey! Haven’t seen you post much lately. Are you doing ok?

[Q8Cooper in reply to gwillistexas]

Hi,

Thanks for asking. Just had a lot going on. Family reunion, Thanks Giving Holidays, Christmas Holidays and getting ready to go to court for disability. Throw in the flu, some ER visits and a partridge and a pare tree and life, so I dropped off the radar for a while. Back now and glad for everyone here!

Kathy in Colorado

[gwillistexas in reply to Q8Cooper]

Sorry you had the flu. Glad you’re better. I think we all have to step back & take a break from it all sometimes. Not healthy to dwell on this stuff too much. 😊

[Q8Cooper in reply to gwillistexas]

Are you going to the Convention in Houston?

[gwillistexas in reply to Q8Cooper]

No ma’am. I wasn’t aware of one. Is it through PBC foundation? I work full time & Houstyon is about 4 hours from where I live.

[Q8Cooper in reply to gwillistexas]

Yes. It will be the 18th and 19th of this May, with a meet and greet the Thursday night before. The conference will be all day Friday and Saturday. And if I am correct this conference takes place once every two years. I am just finding out information now myself.

Kathy in Colorado

[Q8Cooper in reply to YADILURO]

I am not on Urso, only Ocaliva. I have been on only Ocaliva for a year. I am willing to accept that this can happen on Ocaliva and there just isn't enough data to let us know that yet. Thanks for letting me know this about Ursol.

Kathy in Colorado

[martinap]

Mine turned negative after start of Urso. It seems to happen on off positive Amas I remember other posts about this. I am in Urso five years numbers didn't drop enough new hepatologist added bezafibrate and finally numbers dropping. He days I have AMA negative PBC. Good luck to you and keep strong!

[Q8Cooper in reply to martinap]

May I ask what is bezafibrate and is it available in the USA?

Thanks!

Kathy in Colorado

[martinap in reply to Q8Cooper]

It's a fibrate another type of cholesterol lowering medication. Yes available and applicable in the US, they use fenofibrate even better in trials. Lots of research going on last years about effects on non responders to Urso they describe it together with Urso and liver enzymes lower after all!

Some recent research

healio.com/hepatology/autoi...

Also google fibrates and pbc or fenofibrate and pbc

[Q8Cooper]

Good to know! I will share this with my GI, that you and several others became negative on Ursol. Perhaps with more data on Ocaliva, the only drug I take we will find this possible as well.

Kathy in Colorado