Recently diagnosed: I received a note from my... - PBC Foundation

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Recently diagnosed

Zelda5 profile image
13 Replies

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.

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Zelda5
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DonnaBoll profile image
DonnaBollAdministrator

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 profile image
Zelda5 in reply toDonnaBoll

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 profile image
Gioielli5 in reply toZelda5

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

DonnaBoll profile image
DonnaBollAdministrator in reply toZelda5

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 profile image
Zelda5 in reply toDonnaBoll

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

DonnaBoll profile image
DonnaBollAdministrator in reply toZelda5

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 profile image
Zelda5 in reply toDonnaBoll

So far, so good

DonnaBoll profile image
DonnaBollAdministrator in reply toZelda5

Think positive! 🙂

DonnaBoll profile image
DonnaBollAdministrator in reply toZelda5

Think positive! 🙂

Dinasmom profile image
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 profile image
DonnaBollAdministrator in reply toDinasmom

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

Zelda5 profile image
Zelda5 in reply toDinasmom

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 profile image
DonnaBollAdministrator in reply toDinasmom

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

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