I found another: If you read “my story” my... - PBC Foundation

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I found another

Pamela4475 profile image
6 Replies

If you read “my story” my last post you already know the story but I found another. This woman’s mother was on urso for 5 years and her insurance did not pay so once a month they made a run to Mexico to buy her drugs. She stayed on liver diet and took drugs as directed and when md… liver specialist here where she lived checked her ama 2 she was negative for the rest of her life and all other labs were normal. She eventually passed away years later but from breast cancer at an old age there is hope to have all your years 🙏🏻🙏🏻🙏🏻🙏🏻 for everyone

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Pamela4475
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6 Replies
4pjx__ profile image
4pjx__

So, she had PBC and after 5 years it was gone?

Pamela4475 profile image
Pamela4475 in reply to4pjx__

She kept testing ama2 neg off of urso for years but who know with this strange illness which way we will go 🙏🏻🙏🏻🙏🏻

Kakey profile image
Kakey in reply to4pjx__

Is this possible? I don't think so, misdiagnosis maybe. I have AMA neg PBC which I know is rare, but still, AMA is not an essential component of PBC.

Larrysgirl profile image
Larrysgirl in reply toKakey

I am AMA neg PBC also.... 🙂

Tcmb50 profile image
Tcmb50

I just had my yearly hepatologist appointment this week and he made the comment that I should have my ama tested again as they may have disappeared. I am not on Urso yet as my liver results are still within normal range. My ama result was high and my brother is on Urso for Pbc. This consultant has 30 yrs experience with Pbc. Just another strange twist in this rare disease !

Pamela4475 profile image
Pamela4475 in reply toTcmb50

Ye ma’am 🙏🏻🙏🏻🙏🏻🙏🏻 for you and all with pbc

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