Newly diagnosed

Morning, I have just been diagnosed with PBC this week, had raised LFT's in routine blood test, ultrasound showed ??cirrhosis so I was referred to hospital. First lot of results came back strongly positive forAMA's so I have been put on ursofalk 500mg twice day. I am having gastroscopy on Tuesday, waiting for fibroscan ( apparently there is a long waiting list) see consultant again in 3 weeks, feeling very anxious about everything

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  • hi quilter. Sounds a similar story to mine. I was diagnosed in February and going for fibroscan in July. It's scary at first and the hardest part can be the uncertainty. But there's loads of good info on here and I'd recommend joining the pbc foundation. It's a lot to take in at first but there's lots of support on here whenever you need it. Be kind to yourself.

    best wishes.

  • Hello Quilter1

    Welcome to the forum. As Angel_b has said if not already a member the PBC Foundation web site is free to join through the icon above and has a lot of useful information. Especially of interest are the articles written by professionals in the Bear Facts magazine and the video presentations. A DVD is available from Liver North which is another free resource.

    livernorth.org.uk/ however they do suggest a contribution to cover costs.

    Fortunately PBC is for many of us a slow progressive auto immune disease which is helped by URSO which should be prescribed relative to weight. I am currently 78 kilos and take 1250mg a day. "They" say you are more likely to die with PBC than because of it. I was diagnosed in 2006, take medication regularly, keep to a healthy varied diet low in salt and keep away from all processed foods.

    I understand you feeling anxious but stress is not our friend so if you can find ways to relax and ease the anxiety that will be good. For myself I recently learned how to use You Tube guided relaxation sessions from my mobile phone which I have found to be of great benefit.

    Keep in touch, let us know how you get on. There are a terrific bunch of people on this forum.

    And just to finish I like your user name so guessing you like to Quilt, I am a cross stitcher which I find calming and relaxing and a great way to shut out those nagging thoughts :-)

    best wishes

  • I used to do lot so of cross stitch, still got some unfinished but find patchwork much quicker ! Still do some hand embroidery in my quilts though, it is my 'me time' given the chance!!

  • Fibroscan is more accurate than ultrasound so hopefully you'll get one soon. My ultrasound was like yours but fibroscan showed still in early stages. Diane x

  • Hi Angel,

    Your story sounds similar to mine too. My initial ultrasound showed suspected cirrhosis but the fibrous can, which is more accurate showed a healthy liver. You should be able to get results the same day. Any reading 7 or below should be normal i.e. Healthy. Mine was 3.5 so I was so relieved. Also after 6 months on urso my lfts came down to normal range.

    Good luck xx

  • that's fantastic news Hils. It's reassuring to hear that. Thank you

  • Quilter,

    Give us a call on 01315566811 and we can talk this through with you in detail.

    Yours,

    Robert.

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