Pbc

[Globearsliver52]

Hi my name is Gloria 65 from West Sussex I went to my doctor because I couldn't get rid of heart burn ,a few blood tests later I am told I have pbc primary biliary cirrhosis,this is all new to me ,I have just had 3scans and now waiting for more tests . My doctor asked if I drank alcohol,I don't think at first she believed me but I don't drink because I don't like the taste . Thanks for reading will let you know how I get on .

[Gemma68]

Welcome! 👐🏻

[Kate50]

Hi Gloria, sorry you have been diagnosed with pbc, but you will find great support and information on here, the pbc foundation have their own community on health unlocked you may want to browse some posts on that, also the name primary biliary cirrhosis was changed to primary biliary cholangitis in 2015, any questions feel free to message me and love your dog such a cutie, take care 🌸🌸

[Porphyriamaniac]

Hi Gloria, welcome to the forum. Your picture is lovely 😊 I can't really help with regards to the pbc diagnosis but I do know you are in the right place for support and answers. It must have been a shock for you but I'm sure the consultants will soon realise you aren't a drinker, they presume a lot of us are when its not the case in all of us. Below is a link to the blt's page on pbc if you've not already seen it. All the best to you, keep us posted, Stacie xxxx britishlivertrust.org.uk/li...

[Hidden]

hi gloria first thing i must say is don t be worried easy z i know im 62 had pbc for around 10yrs been on meds for last 8 i don t drink either for same reason plus the effects anyway hopefully your scans will be ok i was told the same way via bloodtest when i went to my very first consultant appt i was told i would die with it not of it as it is a slow progressing disesase u will encounter lots of bloods being done but hope u are ok this is good site good luck and let us all know xxc

[GrittyReads]

Hi Gloria,

Pleased to meet - your dog is so lovely! I wish we could have one!

First of all, don't stress yourself, PBC is not at all the worry that is used to be. Do check out the 'PBC Foundation' either just Google, or search around on 'Health Unlocked' as they do have their own 'Advice/Support/Question site, here on 'Health Unlocked'.

But, really, don't stress. For a long time now, PBC has not been the condition it once was, as developments in early and accurate diagnosis have improved hugely, plus treatment with Urso has made a massive difference, and now there is another drug, and lots more research in the pipeline. Before Urso, PBC could progress to scarring of the liver - hence cirrhosis - but now, thanks to treatment and early diagnosis, this rarely happens. Therefore the name was changed a few years ago , from 'PB Cirrhosis' to 'PB Cholangitis'. Also, it was never 'caused' by drinking - although a heavy drinker with PBC would be putting their liver under even more stress, which is why a lot of PBC-ers give up alcohol - although in moderation, this is not a requirement.

The 'PBC Foundation' has a great website, with contact links to their helpful advisors, so you can talk to them via phone or email. There is also loads of info on the site, plus, if you join (it's free), you get access to more info, plus the tri-yearly magazine 'Bear Facts'. This has all the latest advice and developments, as well info on PBC Groups in the Uk - there may be one near you - and articles by the UK's leading 'PBC Specialists', who have a great relationship with the 'PBC F'.

One thing I would advice you to do, is check the details of your diagnosis. It's a bit of hard work, but it's good to begin to understand the tests that need to be done, and which need to be positive, for a full diagnosis of PBC. Depending on what 'exactly' the scans were, that you have had (eg: big difference between a normal ultrasound, and a fibroscan, which can tell much more) they were probably just to check your general liver and abdominal health, and rule out other causes of your discomfort. Also, have you seen a liver specialist, a heptologist? This is usually the second port of call once a GP has done blood tests that suggest PBC. I would try to see the best one near you, preferably one who is a PBC specialist.

Above all, have fun, enjoy yourself and do things you love to do. All autoimmune conditions thrive on stress, so keep on living life to the full and treating yourself (tho' do watch food and diet!).

Take care, Gritty.