I am wondering if anyone has been diagnosed with Stage 3 PBC? My LFTs had been elevated for years, but finally diagnosed in Feb.

[Doodlebug1]

I have been on Ursodial for a month and my LFTs have dropped considerbly. My bilirubin and albumin have been normal. Has anyone heard of survival probability/risk score of PBC patients from the Mayo Clinic in the United States and if it has accuracy?

[Hidden]

Hello Doodlebug1.

I had elevated LFTs back in 2010 when I went to see my doctor with regards to persistent and irritating itching that wouldn't vanish.

Nine months later in Dec 2010 I was informed I had PBC and started on urso. I did notice prior to being diagnosed my LFTs had actually dropped naturally which to me gives me the hope that this can happen. I explain it to myself that the PBC is stuttering and starting as it's not actually known really from diagnosis how it will progress.

The urso is the bonus for most with PBC as it brings the LFTs down, some more rapidly than others. Suppose that is down to a lot of factors, age, how you were at diagnose, etc.

Here in the UK as I suspect you are in US with mentioning the Mayo Clinic (?) majority of PBC patients were diagnosed with AMA (antibodies) test and abnormal LFTs, GGT and possible symptons (I had the itch and also fatigued at the time).

I guess the consultant I saw a couple months after diagnosis (he relayed the disgnosis to my GP who had to inform me), he was going off the LFTs (my scan 6 months prior showed pretty normal organs) and did say that I was in an 'early state'. Don't think we really go overboard here with stages and quite frankly I'm not interested. I'd rather get on with living life now as getting worked up about perhaps what stage I am at as these stages can last a long time, even if someone reaches a cirrhotic stage.

Now a couple years ago I did find a PBC model for life expectancy on the Mayo website. I put my blood results in at the time and I got a pretty normal life expectancy that is if I was reading it correctly. It's not to say that if Mayo gave me a prediction I would go that way as there are always exceptions to the rules.

I think you need more time for PBC that you have to sink in and once more time passes and you are still plodding on you do start to see things in a different light. I used to scrutinize the bloods in the early days when I got the print outs, these days I just have a quick snoop, feel disappointed if something isn't as good as previously and then file them away and get on with life.

I've always had reservations about urso myself. Never thought I'd find myself having to take a medication that is deemed for life. Was never one for visiting the GP prior to 2010 and for me that was a hard thing to digest alongside it doesn't seem to be an easy process for something as simple as repeat bloods, repeat prescription and the odd drop-in to see GP at med review. But I tell myself that another year has passed and I have been to have known PBC for just over 3yrs now and I am still rocking and rolling. (I not longer have fatigue, that left me at some point within the first year of diagnose, just left with the itch that is a nuisance at the best of time.)

[sistergoldenhair]

Hi Doodlebug, I was diagnosed in 1995, I was stage 3, I have just gone into stage 4 (chirossis) about 3 yrs ago. I have been on urso forever and before that actigall, I also started milkthistle about 2 yrs after diagnosis. I am now 55 and have some set backs but nothing that has knocked me out Lots of prayers and pushing on, as far as the Mayo Clinic, they are regarded as one of the top clinics in the United States..........just make sure you and your doc are on the same page..................thoughts and prayers, cyndy