IM BACK AFTER ALMOST A YEAR---Still no answer - PBC Foundation

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IM BACK AFTER ALMOST A YEAR---Still no answer

breeski profile image
8 Replies

AROUND this time last year i was put in the hospital with elevated AST, ALT and Phos and ANA positive.. along with super bad pains and nausea. 3 different hospitals, and a bunch of liver speicialists and no one was able to come up with why or what.... sooo time has passed, I only had 3 flair ups throughout the last 7 months, buttttt as of Saturday after taking an ALEVE, * which i have taken and hadnt had any reaction to* suddenly the pain is back. . waiting on blood results... Has this type of thing happened to anyone?>. I Last October when i was admitted into the hospital they did a biopsy, and said it was inflamed, but nothing major.... my liver specialist also said the liver wouldnt have pain... Im just out of ideas, I am now going to be seeing ANOTHER liver specialist but I have a feeling I will get the same lack of results.. My gastro said AutoImmune Hep. but the liver specialist said she didnt want to commit to anything early on. *3 months in at the time.. Thank you everyone!

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breeski profile image
breeski
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8 Replies
Stephanellie profile image
Stephanellie

So sorry to hear this. I was diagnosed with what they thought was autoimmune hep about 6 months ago and now they are saying it’s PBC. I’m going to start Urso next week. Hoping to feel better soon. Hope you get some answers! Hang in there!

EileenUSA profile image
EileenUSA

How stressful to not be able to get a diagnosis. Praying that the new specialist will get things figured out. As for upper right quad pain, I've seen lots of women posting here mention it. I believe it can be the lining. I truly hope you get some answers. Hugs.

Yes. Pain from liver inflammation commonly called URQ pain by PBCers. Liver doesn't actually hurt, but it causes pain In surrounding tissue. Best Wishes.

DonnaBoll profile image
DonnaBollAdministrator in reply to

you are absolutely right about the liver having no nerve endings but the capsule around it does. Liver pain is certainly real.

mamma261 profile image
mamma261

I have enlarged liver to the point it pushes against other things and I have to think that would cause some of the pain . I take 1200 mg urso daily and 10 mg ocaliva

DonnaBoll profile image
DonnaBollAdministrator

Did you have a + AMA ? you mentioned ANA.... according to the Standard of Care (AASLD and EASL) a diagnosis can be made with a + AMA and elevated liver enzymes. So often it takes time to make a diagnosis. This can be hard, I know. I had liver enzymes repeated every 3-6 months for a couple years before a true diagnosis was made. Just make sure you've had a AMA drawn as well. A + ANA can mean the presence of other auto immune diseases. Let me know if I can help in any way.

breeski profile image
breeski in reply to DonnaBoll

AMA+ when I get my blood drawn now and no longer ANA it’s the weirdest thing. (4 blood draws) Thakkfully since I had posted this I have no had any issues. Still no idea what happened at that point but thankful it had currently subsided.

DonnaBoll profile image
DonnaBollAdministrator in reply to breeski

Are you taking Urso though?

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