Super Confused

[kosy2]

In January 2011 I was told I was AMA+ and I had PBC. In December 2011 I had a lap band removed and while they we in there I requested a liver biopsy. The results showed I had PBC. I refused any medication for PBC because I was not taking medicine that "may" help slow dow the progression of PBC.

Last week I saw my gasto doc to scheduld a colonoscopy. He looked at my recent blood work and said he is thinking I never had PBC. He ordered a new AMA blood test. He called with the results and my AMA is negative and I do not have PBC. What's up? The liver biopsy 12 years ago said I did.

[RishiMaini]

Same happened with my Dad as well. In 2017 his AMA M2 was positive but in 2022 AMA M2 became negative (reconfirmed with tests from different labs)!

I asked the Doc how is it possible ? He mentioned that since PBC is an autoimmune disease, they sometimes have seen cases where ANA profile might shift from one thing to another. In short, AMA M2 might be negative, but some other ANA profile might become positive. He mentioned that there are cases where autoimmune disease might shift from one bucket to another. I was not convinced by this explanation. BTW , during the negative testing , Dad was on low dose steroids (self-medication). Not sure if that skews the testing results!

Unfortunately, the fact is , Dad is still not doing well (despite of AMA M2 -tive now) . He is still showing all the symptoms of liver fibrosis/cirrhosis ☹.

If your AMA M2 came -negative, and you are not showing any symptoms of PBC , that’s a good sign in my opinion!

Wishing you a good health!

[Lu11 in reply to RishiMaini]

You can have PBC and be AMA M2 negative. pubmed.ncbi.nlm.nih.gov/302...

[RishiMaini in reply to Lu11]

Thanks but the article does not talk about going from positive to negative.

[Lu11]

you’re right, I’ll do some research on that, but this illustrates that even if you’re AMA negative you can have PBC

[Lu11]

This article below is interesting. Maybe something else affected the AMA result this time? Have them check Gp210 and SP100. When patients are AMA negative they test these 2 markers for PBC. Keep us posted please. 💓sciencedirect.com/science/a...

[PBCRobert Partner]

Hi,

Thank you for your question.

I am aware some patients have moved from AMA+ to AMA- and still had PBC.

Yours,

Robert

[kosy2]

Thanks to all that replied. I kinda get the AMA thing, however how about the liver biopsy showing I have PBC?

[Readlots]

It would be worth pointing out your liver biopsy results to the doctor suggesting you don’t have PBC. They may not have read all your notes. However, 3 years after a PBC diagnosis a doctor reviewed my biopsy results and decided I have PBC/ autoimmune hepatitis overlap. So they can change heir minds as medical knowledg expands.