information is need if anyone can help. thank u.

[melbourne]

Hi i had a AMA positive when i went to see a immunologist about something else, so they ordered my doctor to do another test and it has come back positive again, but negative for ana.

All my LFT are normal and my scan of upper abdomen looks normal.

i saw on my notes possibility of pbc, but lft test normal, patient asymptomatic.

I am waiting to see a liver doctor( god knows how long that will be on the NHS)

does this mean i have PBC??? why put Possibility??? can u have AMA and never get PBC???.. i am a little lost of what is going on and my doctor was a little crap.. he didn't know.

thanks k. x

[JennerLayne]

Hi Melbourne. My tests were similar to yours. I have positive AMA, no ANA, no SMA, slightly elevated LFTs (which have since dropped back to the normal range via a gluten free diet change), normal ALP, normal BIL, really high IGM and IGG. I have some fatigue (could be because I am 50, travel often and have young kids), but do not have the itch. My joints are somewhat sore and I was sent by a Rheumatologist to the Gastro because of bloating, indigestion, GERD and food sticking in my esophagus. My ultrasound was clear on the pancreas, liver and right kidney. My gallbladder has already been removed.

My gastro wanted to do a liver biopsy to get a baseline given the positive AMA (coupled with the IGM because my ALP is normal) and surprisingly, the results came back as Autoimmune Hepatitis (nothing in my bloodwork points to this) although the specific samples they retrieved didn't point directly to PBC but cannot be ruled out. There are missing / damaged bile ducts portal fibrosis, and the pathologist suggested results correlate to blood --- which points to PBC. Right now, my gastro suspects an overlap syndrome and wants to watch my labs before deciding which course of meds to start me on (corticosteroids, Urso or both.) The pathology reports used the word 'mild' in several places, so my doctor doesn't want to rush treatment since my weight is still dropping and may impact my LFT numbers. He explained that he wouldn't know if it was my weight loss driving the decrease or a specific drug (which could in fact be the wrong course of treatment anyway.) It's all so complicated!

Oddly, several years ago, I did have super elevated ANA and other bloodwork which may have pointed to AIH, but was never tested, as they were actually looking for a suspected lymphoma (which they never found) due to enlarged lymph nodes that showed on a CT.( I read a report recently that many people with PBC have these specific enlarged lymph nodes.)

Perhaps your doctor wrote 'possibility' as in some countries, there is a different list of criteria that must be present before they diagnose PBC. The AMA may be present in your blood, and hopefully is not active right now since you are still asymptomatic.

Please keep us posted.

[melbourne]

Thank you for your answer... i am in shock really as i just picked up test results and i thought i had a AMA test positive in may and one this month but found out that i was positive in November last year and was never told. so god knows how long i have had it. It's funny i do sometimes get enlarged glands in my neck, i though this was because i have lyme disease. so i asked what my LFT's have been like and they have all been normal since 2009, i don't even know what that means. no ANA, no SMA, just AMA M2.

[JennerLayne]

Hang in there, Melbourne. I just found out about my positive AMA and PBC in April after being referred to the Gastro in March. My biopsy was performed in May, so it's all happened rather quickly. I've been in shock too, but the folks here are a living testament that while our lives change, each of us can bravely move forward and find ways to adjust to living with PBC. I am sorry you are going through the process of getting a diagnosis and please be assured that you can ask anything, gain encouragement and find support here

[Hidden]

Hello.

Normally a positive AMA results is usually what PBC is diagnosed from. You can have negative results too even if you have had a positive. Normally a biopsy can be done to confirm PBC in the event of any query but that would be your choice.

Asymptomatic means one has PBC if this is the case, that has no symptons currently. You may never go on to have any symptons and you can have PBC and it never moves forward or it can at some point start to become symptomatic.

On presenting at the GP I had itching and at the time fatigue. My bloods showed abnormal LFTs (tho' not abnormally high). I had a scan 2 months after repeat bloods for other things and continuing slowly rising LFTs and mine showed pretty much a normal liver and other organs. One of the bloods was showing slight inflammation of the liver (not 100% without checking but think it is the GGT). I had after my first GP visit in 2010 a 6 months of bloods and the scan and then the AMA test which proved to have a high titre of the AMA. I've not had a further check of the AMA to my knowledge and I was diagnosed Dec 2010.

I started on urso Dec 2010 and have since had LFTs that have started to come down over time and odd times there has been a slight rise to the last one but nothing significant. My fatigue has long since gone but that is also down to lifestyle changes too. The itching persists at night but again that is not as rampant as it was back in 2010.

Some patients who are diagnosed with PBC do go on to have normal LFTs with urso, others remain stable and in what is considered a normal LFT range for PBC (as I am apparently am currently). Some fortunate ones do go on to become remissive, that is the PBC stops progression but there is no way of knowing whether it will ever restart or remain that way.

It can be daunting at the beginning but as more time goes by (for me it's been almost 3 and half years now since I started itching), you do shrug it off a bit and get on. If I didn't itch I'd not think about having PBC. I've resolved myself to thinking I'll always now have the itch regardless but I get up each day, say I'm still here and go with the flow of it all. Time is too precious not to do so and moreso when you've been informed you have something that is with you for remainder of life and you never know how it can progress.