Scary times!

Hi everyone, only got my diagnosis in November 2018, only symptom was itching really. Bloods taken as part of gynae investigations, so lucky to have stumbled across my extremely high levels!! Only symptom was itching, which i assumed was allergic reaction to something! Foolishly decided to find out what I could on the internet, silly idea, scared the life out of me! Average life expectancy, 16 years for early diagnosis, 7 years for later!! Not sure got my head around it yet, still a little in shock, relatively fit and healthy all my life! Already feeling a little more positive reading the posts out there, so thanks for that everyone!

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Welcome here Vegasgal - Don't worry about Dr Google's meaningless predictions. Shock is what most of us have felt at diagnosis. Very soon others will respond and you'll be much reassured. Best wishes!

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Thanks!

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You are welcome! I was so tired yesterday when I posted to you and as I went to bed noticed that I was wearing odd shoes (all day) and that one was brown, one grey and one a size bigger than other. But see, there's a reliable body of people here always popping up and steadying each other one way or another!

[ninjagirlwebb]

If your pbc is caught at an early stage & you respond to urso, chances are your life expectancy is the same as the average person. This is what my hepatologist tells me. So don’t even let your mind go there.

Make sure you take your meds every day.

Haley

[EileenUSA]

Hi

Ok.. deep breath now... So much outdated on the Internet regarding PBC so be cautious with sources.

Here is a post by Robert regarding PBC and Life Expectancy- it will give you some encouragement. btw- Robert is head of the PBC Foundation out of the UK.

They do great work in research and advocacy for us! You can join the foundation and get up to date info on PBC.

here's the link to life expectancy post:

healthunlocked.com/pbc-foun...

[Roz49]

Hi I know how you feel , I got my diagnoses last week I only found out after some blood tests I had for stress and the liver profile came back with alkaline levels and GGT levels I felt ok I thought I was just tired from my busy job. I feel ok I am on URSO and starting to feel ok I must of read the same web pages it said the same thing , scary stuff I feel fine just tired but the constant tests and hospital appointments are keeping me busy at the moment. Have you had any tests yet??? I have only had a ultrasound and fibro scan just waiting for biopsy appointment to come through .

[kingsnorth]

Hi l was diagnosed last December by way of biopsy l had itching on and off for nearly two years this was put down to hives and l was taking antihistamines on and off. My blood test showed elevated lfts mainly ALK P. My consultant thinks l have had it for years especially as my lfts have been elevated since 2015. I’m taking URSO and my lfts are now back in range. PBC scared me at first but now l just get on with life and only get anxious when my hospital appointment is due. Eat healthy and get your information from a NHS website or Livernorth. I have joined a PBC Facebook page and share information with other suffers. Good luck