What a long three months !

Well since my last visit to the consultant in March where he told me off my bloods I had PBC, But was also haing biopsy to confirm and stage. i have had my biopsy in April after battling for a date. 8 weeks after the biopsy I finally got to see consultant again for results! biopsy confirmed early stages PBC, biopsy showed inflammation and fibrosis with lymphocytes etc. been on urso since march 2 x 300 per day( pleased to say no side effects!) and levels improved :-).

Waiting now for a dexter scan and another scan on liver. Since biopsy starting a few weeks ago experiencing stitch like pain, so getting that checked out. Fatigue just the same and slight itching more at night.

All in all things could be worse so onwards and upwards!

Hope you are all keeping well - the forum and all it's members are a huge information network and support so thanks all! X

2 Replies

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  • Hello.

    Well I visited the GP back in early 2010 with itching (and also had fatigue which I wasn't bothered about as such as I was working flat out full-time at the time), he took bloods and the LFTs were elevated. I ended up with an ultrasound on my abdomen which showed up pretty much normal.

    I ended up then 8 months later having first visit to hospital consultant at out-patients clinic and he took the AMA (and ANA). The AMA was positive (ANA negative). I got the diagnose from this. The GP I went back to as he got the results from the hospital doctor informed me I had PBC and it was he who assumed I'd have a biopsy. I started on urso Dec 2010. It has never been mentioned by the hospital consultant due to the 2 symptons I did have (fatigue long since gone, itching better than it was but it is nightly) along with elevated and 'deranged' LFTs (they did drop slightly prior to seeing the hospital consultant and that was with not even having urso), positive AMA I got the diagnose.

    I know had I been offered a biopsy following the AMA I wouldn't have bothered but each one of us is different and I think it depends on the doctor and what you are informed. I know it doesn't make any difference to treatment, still given urso with or without a biopsy.

    I've never thought about any stages of PBC and quite frankly I don't give a damn there. I go with how I am feeling and do think nowadays with scans and also bloods it is possible to know how someone with PBC is progressing. I'm of that thought I'd rather not know, less to worry about really.

    I found back in 2010 prior to diagnose it can start to dement one slightly as you are trying to figure out what could be wrong and hospital appts seem to take forever. I had my first appt cancelled a few wks prior to attending (was 11wks off when I originally received it following the GPs referral), the following appt the wk after, I had a holiday booked!!! My husband and I booked it after receiving the first appt having the hospital date but... I rang the hospital and explained and because they had cancelled it they found a slot the week after the holiday so it took 13wks before I went to my first appt and then another 2mths before I got the results of the AMA. The good old wheels of the NHS.....!

    Since diagnose and starting urso, I have slowly just got on with life and been on urso almost 2 and half years now and time hasn't seem to drag or standstill the same. After awhile it gets monotonous, well it does for me, thinking about PBC every day so most of the time I don't. I do think about it come evening if I feel a bit prickly as at night time if one then finds they struggle to get off to sleep due to the itch, it can become so nightmarish. But I've had a pretty good week this wk., no interrupted sleep so I do feel at the top of the world and shall make the most of it.

    Hope you are still doing well.

  • HI Jewelspeak,

    Good to hear your levels have improved since starting Urso. Hope you can get to the bottom of the stitch, and that all goes well with your other scans.

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