Primary Billiary Cholangitis - British Liver Trust

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Primary Billiary Cholangitis

Ikarix profile image

Just had a diagnosis of Primary Billiary Cholangitis. Anyone else got this . I’m 73 & dr has prescribed Ursodeoxycholic

14 Replies

Hello and welcome aboard. There are several forum members with PBC but if you haven't already discovered it the PBC Foundation also have a forum here on Health Unlocked too so lots of other patients with the condition there. healthunlocked.com/pbc-foun...

The PBC Foundation website is also a goldmine of information and would perhaps be useful to you. pbcfoundation.org.uk/

All the best, Katie

Trust10 profile image
Trust10Partner

Hi lkarix and welcome to this friendly forum. Just to add to the link below, if you are in the UK and would like to talk, our nurse led helpline is open from Monday to Friday 10am to 3pm on 0800 652 7330.Here is a link to our information on Primary Biliary Cholangitis:

britishlivertrust.org.uk/in...

Trust10.

Hi there, I've got PBC overlapped with AIH and also on Urso amongst others. I was 58 on diagnosis and my hep told me I'd almost certainly die ‘with it' rather than 'of it'. So now although I do get tired more than before (ie when I was younger 😊) I live a pretty normal life and hopefully you'll find the same.

Ikarix profile image
Ikarix in reply to Limalama

O thank you so much, yes hopefully that will apply to me too

Hi Ikarix. I was diagnosed with PBC at the age of 34 (21 years ago now) but suspect I was suffering from symptoms long before diagnosis. I was prescribed URSO and went along 'merrily' living a normal life for the next 14 years until I took a turn for the worse and other issues presented themselves. To cut a long story short, I was listed for liver transplant and have now been living with the wonderful gift of a new liver for the past 6 years.

Agree with the other comments - take a look at the wonderful PBC Foundation website for lots more information.

Ikarix profile image
Ikarix in reply to Alfeeee

Thank you , what an amazing story

I too have PBC. I was diagnosed in 2016. I was put on Urso back then. And I am doing quite well. I tire easily but I don’t know, if it’s from the PBC. Or the fact that I’m 64 years old and still working. I just went for a liver scan today. Which I go for labs and liver ultrasounds every six months. My liver enzymes are always elevated. Probably always will be.But my ultrasounds showed that my liver remains stable. I wish you the best, through this journey. Also people on this forum, I have been very helpful. When I was first diagnosed. And also with any questions that come up.

Hello LorrainLouise, thank you, I will be having bloods done again end of December for the first time since starting Urso, will be interested to se my blood levels , especially my ALP as that had risen to 600 a couple of months ago, very best wishes to you .

Yes I am 73 diagnosed with AIH 12 years ago then 3yrs agoPBC been on urso. Now just had to double the dose so far no trouble, try to lead a normal life, walking, playing sport still, if I have an off day just tend to treat it as a lazy day off, best of luck on your journey.x

Ikarix profile image
Ikarix in reply to Suecong

So far so good,then , thank you so much , all the best

Hi, good to meet you. I was diagnosed last year, I am 51. I've been taking Urso for 12 months and live a normal life. The most frustrating thing is that I can't get to see a specialist. I was diagnosed by my GP through blood tests and scans to try and determine what was causing abdominal pain. I wrote to the consultant and explained by anxiety and got a letter back blaming covid. I've not had bloods taken since January. Unless you chase you get nowhere. Hope you feel well and the Urso keeps your symptoms at bay. Join the PBC foundation, they are a great support.Helen

Ikarix profile image
Ikarix in reply to HB70

Hello Helen, good to hear from you. It is so frustrating when you can’t get to see someone face to face . I feel as if I am taking up to much of their when i try & ask questions over the phone . It would be really reassuring for you to get your bloods checked more often . I count myself so fortunate as I am checked quite regularly as I had Gallbladder cancer 4 years ago & am on a 7 year trial . As I always feel well apart from getting really tired , I don’t think I would have been diagnosed if it hadn’t been for being on the trial . Good to hear Urso is working . Iv only been on it a few weeks & it’s giving me stomach ache & bad wind at the moment but I guess that will pass 😂😂😂. Best wishes to you .

I have been on it for over 15 years. Started when I had PBC but now I have full liver chirrosis these last few years. So far not too bad.

Ikarix profile image
Ikarix in reply to bobbycat

O I am so sorry to hear that, what exactly happened , did the drugs stop working .

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