I have tested positive for AMA twice,my doctor says I have the start of PBC, yet biopsy didn't show it. Can you be AMA without having PBC?

[sarahalawson]

Biopsy showed features or NASH. My liver enzymes are elevated and have been almost a year.

[Kitsilano]

My understanding (I may be corrected) is that you can be AMA +ve without having pbc. But if you have AMA AND abnormal liver function tests that is considered sufficient to diagnose you.

[Val02]

Yes you can but if your enzymes are elevated and you are AMA+ I think that is considered a diagnosis for PBC. If your liver isn't damaged then that means you are in the early stages (good news). Have you been given URSO?

[Clairetopaz]

I tested strongly positive. Ultra sound didn't show anything, liver function blood test were fine. I was told by gastro at hospital I have early PBC, weren't given urso and just told to go back in 6 months

[CinSF]

I've read recently people with PBC always seem to have the myocondrial antibody, but everyone with a positive myocondrial reading may not have PBC so yes you can have the antibody and not the disease. Also they do not know what role this antibody plays in this particular disease, they just know it's present. So it's confusing.

I wrote this on another thread, but I will offer it here too. I was asymptomatic, but received the diagnosis of PBC because of elevated PFTs and a positive AMA test. Started urso in July of this year.

Behind the scenes I had stopped drinking alcohol. Had an ultrasound this week that retesting revealed my liver function tests are now mostly within normal ranges. Ultrasound showed no liver damage. So this begs the question - is it the urso or the abstinence from alcohol that has made a difference and do I have PBC at all since the myocondrial antibody now tests negative.

Have not received the final word yet from the liver doc, but I think we will be stopping the Urso and then do the labs again in three to six months to see what gives. IN the meantime I will restrict my nightly wine habit to an occasional sip and maybe in a few months I will know more.

P.S. I have plenty of other medical problems so if I can scratch this one off my list, I would be very grateful.

[sarahalawson]

My doctor hasn't put me on urso. Currently taking multivitamin, vitamin D and E. I was hoping there was a chance I didn't have PBC. I'm a 32 year old single mother, the father of my children and my fiancé passed away when they were just babies and I am all they have. I've been suffering mentally with pain and anguish at the thought of leaving my kids alone in this world. My doctor has just said come every six months until your liver gets bad and then we will see about a transplant. He says there is nothing I can do in the mean time to help. He said best case scenario I may live to my 60's. I stopped taking any OTC med's. Never have been much of a drinker, but since this diagnosis I haven't had a drop of alcohol. I quit eating sugar because it's metabolized in the liver, thus reducing work my liver has to do. I also eat one serving of either broccoli, cauliflower, cabbage or brussel sprouts every day because I've read these foods help your liver to work better. If anyone knows of anything else I can be doing I would love to hear any advice.

[ho11y in reply to sarahalawson]

Oh dear, I am so sorry for your loss, it's hard enough bringing up children without having to cope with grief and illness. From experience, it depends which doctor you speak to as to what you are told. Clearly, I do'nt know your case, and I am not a doctor, however, you might never need a transplant, the PBC might not progress to that stage, and the chances are you will surpass your 60's. At this stage and your age, your Dr does not know what will happen, nobody does, because not enough is known about the illness. I was diagnosed in 2008, without the aid of a biopsy, just on blood tests, no idea what they are, nobody has told me with the exception they are raised or not. Once I got over the initial shock I decided why worry about something I can do nothing about. I was diagnosed with PBC/AIH overlap in April and have been put on steroids and other medication, which has brought my blood tests back down to normal. (I have no symptoms at all) so I never know when my levels are raised. Although I was diagnosed 5 years ago and got used to it, and this is easy for me to say, but, try and put it to the back of your mind, it wo'nt do you any harm eating healthier, but all this worrying will make you ill. Also, make sure you have been referred to a Gastroenterologist, and tell them your concerns.

[sarahalawson in reply to ho11y]

My doctor is a gastroenterologist, he just doesn't seem to be very empathetic. My liver enzymes are steadily rising, from april to july they doubled. What is AIH? My ultrasound showed severe fatty liver disease and cirrhosis, but biopsy showed NASH, which Dr says is the start of PBC. Thank you for the encouragement. It's hard on my family and friends to discuss this with me, so I hold it all in. I hate being told there is nothing I can do about it, maybe I'm grasping for straws, I don't know.

[sarahalawson]

When is the point when you need to be taking urso?

[ho11y]

Sorry, AIH is autoimmune hepatitis. I was put on Urso, when first diagnosed, but my body could not cope with it, so I stopped taking it. Since being diagnosed with autoimmune hepatitis, it turns out it's that that stopped the urso working (I'm not sure why). Obviously, I do'nt know where you live, but if you have access to a major hospital, there might be more than one gastroenterologist, if I were you I would ask to see another one.

[Hidden]

Do you know what your alp is