PBC Foundation

Urso-responsive cholestasis?

Hello! I've been poked and prodded for 6 years. Long story short, I've had every test available (in two different cities) and my GI Dr. told me that because I tested negative for AMA, that he is very hesitant to call it PBC. So he labeled it urso-responsive cholestasis BECAUSE, my enzymes are normal on urso! It is a miracle because they have been elevated at least 3x the highest unit ALT, AST, and ALKphos for many years. I've had two pregnancies and had complications because of my liver. Something called Cholestasis of Pregnancy. It was horrible and I was high risk.

Is anyone else AMA negative in here?

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My situation is very similar to yours. I am AMA negative with ALP, GGT. and ALT 6-10 times higher than normal. I have responded very well to urso, too. My consultant calls it a "PBC variant." Just recently I went off Urso because I thought it was upsetting my stomach and after only two weeks, my numbers went right up again.

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Are you in the US? I'm guessing so, as everyone there seems to see a GI rather than a liver consultant. The ideal would be to see an actual PBC specialist.

Meanwhile, you might want to talk to the advisors at the 'PBC Foundation' a UK-based PBC Charity, who are wonderful (saved my sanity) and who 'host' this site here on 'Health Unlocked'. There is a link to their website at the top of this page, where there is info for phone and email contacts. Their website is wonderful, and if you join (it's free) you get more access.

They recently released an 8-page summary of the recent official document agreed by (I think) UK, Eu and US liver specialists, concerning the actual official criteria to be followed in the official diagnosis of PBC. No offence, but your specialist should know this. The basics have been common for years, which is that 2 out of 3 official diagnostic criteria have to be met for a formal diagnosis of PBC to be given.

In your case, it sounds like your liver functions tests (lfts = GGT, ALK, etc) might be those typical of PBC.

1 - Abnormal lfts typical of PBC is one of the 3 criteria.

2 - The presence of AMAs is another one of the 3 criteria. However, about 10% of people with PBC, don't have AMAs.

3 - In this case, a liver biopsy is required, this is the third criterion.

So, I guess you should have had a liver biopsy to confirm if it is PBC or not. Judging from the little you have said about the blood tests - lfts - you may have PBC, but I would be demanding a liver biopsy, just to be sure all has been formally done.

Contact the 'PBC Foundation' and talk to them, try to have all your results to hand. Do please find out about this new document, that sets out the diagnostic guidelines. If you can get a copy maybe you can take it to your consultant and ask for a biopsy, or second opinion, or further tests to check out why your lfts are off-key.

It sounds like the Urso is working, which is good, but I would want to know that my diagnosis was spot-on.

Hope this helps,

Take care.

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Hi Emilyellafaye,

I am negatiive also. It took over a year for my diagnosis in March of this year. I am negative AMA, ANA, SMA, ultrasound, MRI, normal etc etc. My Alkaline Phosphatase was 410 at the highest . It has come down some at my last blood test—238—but not normalized yet and that is with healthy eating, exercise and Ursodiol.

GrittyReads is right about the biopsy. I had mine in February and it did indicate PBC, stage 1-2. I am in the U.S.A. and see a hepatologist . I also got a second opinion.

Congratulations on your good results!

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