Recently diagnosed

[Zelda5]

I received a note from my Dr. in My Chart that due to my liver enzymes still being elevated that I meet the criteria for a diagnosis of Pbc. I had made an appointment with another Hepa for a second opinion and that appointment is in two weeks. I'm completely torn if I should bother. Its been a long time getting to this point. I still feel there were tests that weren't done that maybe should've been. I've got a high Ana and subsequent tests for lupus and Sjogrens etc. was negative. But I didn't get tested for gp210 or sp100 and I don't know whether I should have been since the Ana was high. There's a few other things. Anyway my last appointment the Dr was very late and my appointment was relatively short and by then, I was so over it and I didn't ask about anything else.

[DonnaBoll Administrator]

Do you have a positive AMA? Along with elevated liver enzymes, this is sufficient for a PBC diagnosis. A positive ANA is usually indicative of other auto immune diseases. You have every right to a second opinion of course. Are you seeing a knowledgeable hepatologist?

[Zelda5 in reply to DonnaBoll]

Yes I have Ama M2 and my Alp is a bit high along with Alt. My Hepa was concerned it was fatty liver and was monitoring my blood work. The Ana was concerning as far as gp210 and sp100, which is related to Pbc, but I'm not sure how that works. Do they test for those after a pos Ana or on their own. Is it something they only test for when neg Ama Pbc is suspected?

[Gioielli5 in reply to Zelda5]

Are you AMA positive? If not the unlikely to have PBC

[DonnaBoll Administrator in reply to Zelda5]

Some experts feel even if you have a - AMA but elevated enzymes, that eventually you will have a + AMA. Continue monitoring the LFT'S every 3-6 months. Are you taking Urso in the meantime? Often continued monitoring of your labs is the key.

[Zelda5 in reply to DonnaBoll]

I have a + Ama M2 and I'm filling my script today.

[DonnaBoll Administrator in reply to Zelda5]

Great! If you have any GI issues at first, try taking a partial dose for a week or so- build up to full dose.

[Zelda5 in reply to DonnaBoll]

So far, so good

[DonnaBoll Administrator in reply to Zelda5]

Think positive! 🙂

[DonnaBoll Administrator in reply to Zelda5]

Think positive! 🙂

[Dinasmom]

I have had an ANA as high as 2500. My PBC diagnosis was made based on a positive AMA as well, along with elevated enzymes. I didn’t get the added tests you described. Not sure if this helps but five years after diagnosis and URSO, I feel fine, have had no progression of PBC and my ANA is now normal.

[DonnaBoll Administrator in reply to Dinasmom]

Sounds like you are doing well. Just keep monitoring those LFT's

[Zelda5 in reply to Dinasmom]

That's awesome. Yes that helps, I hope I can get the Ana back to normal range. I was concerned that something else was brewing.

[DonnaBoll Administrator in reply to Dinasmom]

Do you mean AMA? A + ANA is usually indicative of other auto immune diseases may be present. The AMA ( for PBC) isn't usually repeated to ky knowledge