Is anyone else out there AMA negative. I keep getting little bits of info from my specialist and evidently I am consistently this.

[SamT]

I thought that PBC was usually AMA positive.

Evidently I have persistently raised alkaline phosphatase.

Is anybody else out there like me??

[Val02]

Im not the same as I am AMA pos, but I believe only about 95% of people are positive who have PBC but 5% arent.

Im sure some people who are the same as you will respond. Have you had a liver biopsy? They usually do one to confirm PBC if they are unsure as the damage done by PBC is quite distinctive.

How high are your alkaline phosphatase?

[Hidden]

Have you been tested for anti smooth muscle antibody for autoimmune hepatitis?

[Jtxx]

I am AMA negative and SMA positive. Biopsy showed PBC, even although I am AMA negative (I'm in that 5% of the population) and my positive SMA & bloods meant that I was also disgnosed with AIH. I have, what they call, AIH/PBC overlap syndrome so my treatment is different to just having PBC. Urso for PBC and steroids & autoimmune suppresants for the AIH. Such joy. Hope you are keeping well. x

[Tumbleweed41]

I am basically the same as Jtxx. I too am AMA neg. and have AIH/PBC overlap syndrome. I believe that the high Alk. Phos. is indicative of AIH tho' if I'm wrong I'm sure that someone will correct me. -:). I too am on Urso, as well as Azathioprine for the AIH. Might be worth asking your GP about AIH. ga

[tigger_7]

Hi there, all i know is that I am the same as you, AMA negative, so we are the minority and not classic PBC as I've been a few times now by the doctors. I know i'm positive for the anti-nuclear antibody. That's all I can tell you. I'm on Urso and that seems to be working for me.

[Hidden]

Apparently if your AMA test comes back negative then if there are symptons as I understand and abnormal LFTs then patients are then normally offered a liver biopsy to find out more.

Mine were definitely with a 'high titre' to give the PBC diagnose but it was found I was negative for ANAs.

[kristieerhodes]

I am AMA negative PBC.

[Cher29]

Hi-

I'm exactly like u! Alk phos elevated that was my first clue to this disease. AMA neg but positive Ana... I recently have been diagnosed with stage 2 PBC. I have many other symptomns I'm trying to sort out. My biopsy stated that could not rule out viruses or parasites and this and that??? So it is confusing and a part of me believes I have something else causing this... Please message me privately if u like... Like the other supporters say.. We have to focus in positive things and stay healthy and grateful that we are here and still have to help others in life!!!!

[SamT in reply to Cher29]

Hi there, this took me by surprise as it was so long ago that I posted the question. I don't want to worry you but I have recently been diagnosed with MS! I did develop other symptoms such as what I called wobbly legs, aching legs and a perpetual facial tick. But the fatigue is so much that I can't even hold a book up in bed, when I am in relapse.

Evidently I have had MS for 13 years - and still have PBC/AIH overlap as the two areas are only connected by a confused immune system!

My advice to you is if you think you have something else be persistent with your health professionals. Remember that it is your body and you have the right to ask for more tests. Take care and keep in touch! xxx

[Cher29 in reply to SamT]

I appreciate your comments... I am saddened to hear of your illness. I do agree that we must not ignore symptomns. We do know our bodies... So often I have soo many other issues I don't know where to begin. Also once specialists know u have PBC it seems with my experience they say everything is due to PBC and don't take other symptomns into consideration... I will continue to try and find the right doctors and thanks for the advice!!!

[terri2109]

Hi Sam, I am negative, I think that's why it took so long to send me for a biopsy, my Lft's had been raised for a long time, it wasn't until the fatigue got worse that they decided to send me to Gastro, he sent me for biopsy and I'm second stage, the diagnosis was only last September, my raised Lfts have been like that since I had my fourth daughter, which was 15 years ago, when she was 9 she was diagnosed with Psoriatic Arthiritis and it was quite aggressive, within 6 months she had about four joints affected, the year later my second daughter was at Durham University suffering terrible bullying which resulted in depression and other things, so obviously I had little or no time to even turn around never mind wonder why all I wanted to do was sleep and I think I put the pain down to stress although I did keep going to the doctors but was always really reluctant to because I really felt like a hypochondriac I don't think these doctors are too knowledgeable about pbc, if the itch, the fatigue and the AMA aren't there all together, then they think it cant be PBC , I only had the fatigue and the pain, now im on Urso and just getting a pregnant belly LOL. My Alkaline phos was 415