PBC?

[NCgirl]

I recently (Feb 22, 2013) tested positive for AMA, 52.7 on a value scale of 0.00-0.20.0 units. My primary physician said it was signs of PBC, he did a liver panel and everything came back normal (TP: 7.7; ALB 4.5, ALP 69, AST 31, ALT 38, TBIL 0.6, DBIL 0.1, IBIL 0.5). He thought that I still had PBC but that we caught it before there was any liver damage. Seen the GI doctor today (Feb 25, 2013) and while he agreed I had a high AMA he said he would not touch me (as far as a liver biopsy) because my liver enzymes are 100% normal. He wants to do my liver panel every 6 months to monitor for any increase in the enzymes. Could I have a false positive AMA or could the high AMA be a sign of something else? Should I be doing more before my enzymes increase? I don't want to wait until I have liver damage and then they says you have PBC when I have already tested positive but have no liver damage? This all began with a rash I am unable to get rid of (July 2012). The rash began around a trauma to my leg which occurred in June 2012 but has since moved to include knees and hands. My other symptoms are: enlarge lymph node in my neck (it comes and goes), constipation (I've never been regular, maybe once a week); stress fracture that will not heal (since May 2012), lack of concentration, easily distracted (I can be in the middle of a sentence and completely forget the word I was getting ready to say).

I just want to know what all this is so I can manage it. I hate being in limbo?

I know itching is symptom of PBC but has anyone had a rash they were unable to get rid of? I recently started using an antifungal cream on the rash and while it is getting rid of it in the places it exists, the rash has started poping up in new places.

[zipitydoo]

Perhaps a dermatologist would be the best person to see with the rash.

[roxburgh]

Hi NCgirl - I was diagnosed with PBC in May 2010 and I get all the symptons you do however in respect of the rashes I find my come on when I'm really stressed (normally about work). Its probably all in my head but hey if it helps then its fine with me but I just increase my intake of vitamins through fruit and veg and before I know it the rash has calmed down and soon disappears. I'm really forgetful and have a rubbish memory but I just put it down to my age too (43). I think if you try to worry less you feel better.

[Hidden]

Hello, sorry for certain symptons you have and recently been informed you have PBC.

On the positive side to this at present with you receiving normal LFTs I personally wouldn't actually worry about it overly-much, trust me it's when you start to get abnormal results in at regular intervals prior to diagnose.

I started with the itch in 2010 and know a lot of the fatigue and exhaustion at the time was due to the full-time days (over Mon-Sat) that normally stretched beyond the hours I was supposed to be at work. My LFTs were abnormal and at a glance of yours without even getting mine out (and they are pretty good at the moment tho' still abnormal but considered normal range for one with PBC), I can see myself that they are very good and within normal. I'd like to have those once again as no idea when mine started to become abnormal as I never seemed to have anything wrong with me and it was the itching that took me the the doc.

Knowing you now have been informed it is PBC likely then I'd start trying to look after yourself as best as you can having this heads up. PBC is slow-progressive and it can be possible for some of us to never progress further and even on urso a possibility that the PBC simply halts in its tracks and may or may never pick up again even tho' any bile duct damage that is there will never go away.

I'd like to just add here too. I think that one with PBC even when itching has started and one has received abnormal LFTs., given they are not abnormally high then I think it's fair to say that we haven't got liver damage as such, the liver can repair itself, it is the bile ducts that are affected that cannot repair themselves.