PBC diagnosis??

[Lammasue]

Hi,

I feel that I have been in limbo regarding PBC diagnosis and wondered if anyone could give me some advice.

Following routine blood tests in 2007 (I was referred to a dermatologist as I had a rash on my legs) it was discovered that I had a positive AMA. I was referred to a gastro specialist and had a liver biopsy in 2007 which was negative. My specialist said he still didn't want to rule out PBC. I have had further blood tests in 2008 (AMA positive and LFT's normal) but in 2009 my blood test came back both AMA negative and LTF's normal. In July 2010 my bloods went back to AMA positive and LFT's negative.

I only recently went back to see my specialist in December 2012 (the hospital didn't write to me further and I didn't follow up) and I have had further blood tests and the specialist wants to see me again in four months. He is still convinced positive that I have PBC and wants to see what my blood tests show. I am not on Urso or any other medication. I thought with PBC as well as having a positive AMA I thought you had to have an elevated LFT’s and a positive liver biopsy? Obviously I am hoping my latest blood tests will prove to be negative and I do not have PBC, but if the AMA does come back as positive is it likely that I do have PBC even though my liver biopsy was negative? Apologies for the long message!

All the best.

Sue

[littlemo]

Hi Lammasue no wonder you're confused! I am confused just reading that. As far as I know a positive AMA is more or less a good indicator of having PBC, (think in 95% of cases but check that with PBC foundation, fab source of info and support), however I also had elevated lfts and had chronic itch fatigue and joint pains which is how I was diagnosed and started on treatment. I have never had a biopsy so cannot tell you much on that but lots of people on here have had biopsies maybe post the question again. Good luck hope for your sake you dont have PBC. BFN

[Hidden]

Hello Lammasue.

I presented to my doctor with itching and continual tiredness in 2010 of which followed blood tests (abnormal LFTs), then a scan and finally 6mths later the AMA. (That proved positive and I was diagnosed with PBC and started urso Dec 2010.)

Biopsies are apparently used (well here in UK, not sure where you are located) in event there is some doubt about the AMA. (I've never had a biopsy and have no desire to ever partake.)

However I have also read that it is possible for the AMAs to actually fluctuate. All I can think at present from what you have described is that due to you perhaps not having any symptons and probably being asymptomatic (not at present) could be a case of you may never go on to get further symptons that spell PBC as there are apparently people out there who never know they have it and who never who any symptons. Some it is stumbled across due to blood tests.

I understand it can be a worry once one knows there is something that seems amiss (ie blood results) but at present if you are experiencing what I think are termed deranged LFTs (up and down) then perhaps that is a pretty good sign. I do think that one must have to reach a certain consistent blood results and have symptons of PBC to be prescribed urso if there is some doubt from the medical profession as to has one got this or not.

Good Luck and keep us posted.

[mrspiggy]

Hi Sue,

My specialist told me even if someone has a positive AMA this doesn't necessarily mean a diagnosis of PBC. And that they would normally want to see other test/scan/biopsy results indicating the condition before making a final diagnosis. He said that people who been diagnosed with PBC, 95% of those will have a positive AMA result and not that 95% of people with a positive AMA have PBC (hope that makes sense). He said, as did peridot said, that there are people who are running around who if tested would be AMA positive but never know and nothing comes of it for them. I was diagnosed in March last year and I am finally at a point where I have accepted my diagnosis, I'm happy and I don't worry about the future! Getting fully informed (PBC Foundation) and maintaining a positive mental attitude will get you through this.

Chin up and sending much love xxx

[Lammasue]

Hi,

Thank you all for taking the time to reply to my question. All of your replies have been really helpful and I do feel that I have a better understanding of the symptoms and diagnois of PBC and I feel much more positive in myself.

I wish you all the best and many thanks again.

Sue

[Axl888]

Hi there, I had anaemia and it was whilst I was waiting to have an endoscopy to check to see if my ulcer had healed that the doctor about to do the procedure asked me about a rash I had on my neck/chest. When I told him I had it for as long as I remember, he said it was a sign of liver disease and ordered blood tests and a biopsy. If I had not had that particular doctor doing a routine procedure, it would probably have gone undiagnosed for years as I have very mild symptons that don't really affect me. Also, no other doctor had ever picked up on my rash.