Urso without a definitive diagnosis

[JLBMainer]

Has anyone been treated with URSO without a definitive diagnosis? If one doesn't want to have a biopsy and is AMA negative?

[Jlruggie]

JLBCan you give more info?

From what I understand if you don’t have anti mitochondrial antibody or elevated alp and ast liver enzymes then you don’t have primary biliary cholangitis. The abdominal MRI and liver biopsy confirms PBC and tells what stage biliary deterioration you have and if you have any cirrhosis yet. It’s cut and dry.

You take ursodoil to slow deteriorating biliary tubes. Some people diagnosed with PBC get more biliary deterioration, their biliary tubes close, they get itchy, tired and jaundiced. Bile comes out in their skin. They get a liver transplant. After a few years the auto immune system attacks the new biliary tubes. Most people die of something else though.

I’ve been told by alternate medicine like Ayurvedic dietary practices as a supplement to using ursodoil can cure PBC. 6 weeks of no meat, extreme limits on fats, and salt, no food additives or pesticides, no refined sugar. The prescribe Indian herbs too.

I’ve been looking for a western trained pbc doctor specialist and Eastern Ayurvedic Medicine doctor to prescribe a formal diet and regimen for 15 years. I suspect the pharmaceutical drug industry doesn’t make finding a doctor such as this easy.

Why do you want to take ursodoil?

Jlruggie

[OdinsMom]

There are quite a few people who are AMA M2 negative and still have PBC. If your ALT, AST, and ALP are all high and you have symptoms that correlate many drs will try the urso (pretty harmless if you tolerate it) and if numbers come down they'll give the diagnosis. If you'd rather be sure first talk with your dr about having a biopsy

[JLBMainer in reply to OdinsMom]

yes tks - I have all the signs numbers etc but am Ama negative - I'm trying to avoid a biopsy - and am thinking since it is a likely PBC diagnosis based on all the other tests numbers etc -- rather than have an invasive procedure why not just start the Urso and see if it is effective - that seems to make sense to me

[Marriage01 in reply to OdinsMom]

Yes OdinsMom!! Exactly, what happens in my case. My 3 liver biopsy negative for anything. AMA M2 negative. But, my ALT, AST, and ALP were almost 900 smh I’m not a drinker or anything. They prescribed me this Urso (after almost 20 years of high elevated liver enzymes) Before you know It I was told have lupus and autoimmune immune diseases & HASHIMOTO thyroid & fibromyalgia etc

But, with 60 days literally my enzymes down by half now 2 years later I have perfect liver enzymes and still remain twice daily on Urso for rest of my life. Thank God they suggested to try it. I have my life back.

[Walker222 in reply to Marriage01]

Tk you - I’m very familiar with fibroscan and Stanford etc

The key is I’m AMA negative- hence the question whether I can avoid a biopsy

[CCordier]

Biopsies are not necessarily required nowadays. If you're anywhere near a medical school you should be able to get a test called a fibroscan which measures scar tissue in the liver. I was diagnosed by a Stanford University Medical School hepatologist (Stanford is in the San Francisco Bay Area and is one of the best medical schools in the US). I am AMA positive (I was told it was VERY positive) and my LFTS (liver function tests, meaning AST etc.) were all high, but I didn't have a biopsy to confirm the diagnosis. I had a fibroscan, a painless, non invasive and quick test which is a little bit like an ultrasound in which very strong high frequency sound waves are pulsed through the liver.

I also think its important to say that no diet on earth can cure PBC. Its an auto immune disorder so to "cure" it you have to stop your bodies immune system from attacking your bile ducts which no diet could do. I say this even though I do respect non western medicine.

[Kakey]

I'm AMA negative, PBC confirmed by biposy. But I think your plan is fine, you could see how you go with Urso. You probably know that for some people Urso response can take up to a year.

[Walker222 in reply to Kakey]

How did you first discover your PBC? How was the biopsy?

[Kakey in reply to Walker222]

By biopsy. Bloods off for years. It was fine.