I was diagnosed july 19 stage 1 fibrosis. Like everyone else I was shocked and bewildered as I knew nothing about it. No one offered to explain the disease and I have never heard of anyone having it . When you have serious cancer you are assigned a specialist cancer nurse that can answer any questions but I was left with the internet !! I researched for weeks with alot of negative info, my family can't help me so I contacted PBC foundation who were more positive. Fortunately my LFT's are now within the normal range due to being an Urso responder and possibly rule out AIH. My sister showed me an article about PBC and the headlines were "I felt ok and fit then I was given a death sentance " !!!!!! A very negative article. I am going to write to the paper and complain. I am 70 so in my golden years but if I was younger this lack of knowledge and very negative views must be devastating. I now know that you can live for years with PBC if you look after yourself. I have been reading all your posts for weeks but this is my first comment. I live in Preston, Lancashire, Uk.
Happy New Year
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Beatrice110924
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Happy new year to you too.... I am also a urso responder and after 2 years of being diagnosed I am still in normal range.... just take care of yourself, eat right and exercise, plenty of water and no alcohol and you will live a long time ❤️ we are right here with you
Good to read that you are responding well to treatment.
It is always disappointing that the media feel the only way to impart news is by shock and awe. As I read further through the thread I see it was in the Mail group. What can one say other than as with most of the media what they say has to be taken "under guidance". Shame we are unable to say what we truly think😂😈😂.
Hi Beatrice, I saw this article too. A well-meaning family member posted it too me! I felt shocked & upset to see that headline as well. I threw it in the bin without reading it & have managed to get back to feeling more positive again. Hope you continue to respond & enjoy your golden years! Sue xx
I never read headlines like that about poor people that have been diagnosed with cancer because they know that it is not automatically a death sentence.
Lack of knowledge and facts and figures are their problem so the more people that contact them explaining that we are still alive must surely be a good thing to highlight this disease.
I am sure that the PBC Foundation will make their views apparent .
Hi Beatrice! Sorry you had such unsupportive medics on diagnosis. Same here! We have to do our own research and then educate our own doctors, who mostly know nothing about PBC. I'm 20 years diagnosed now, Urso works for me, im doing well, LFT's close to normal, no rise in bilirubin, fatigue gone, very little itch, living an active healthy life at 66. I mostly ignore gutter press, keep to the Guardian and the Irish Times!
Hi Beatrice l didn’t see the article but I’m shocked to hear about it, l to am 70 and a responder to URSO l was diagnosed over two years ago l was scared at first and if l had of read an article like that in the beginning I’m not sure how l would of coped. There are lots of really young woman with children that are frightened they will not see their children grow up. It’s a shame nobody gave a positive interview. Thanks for your info. Happy new year to you x
Hi I am 39 and got diagnosed when I was 35 I was recently referred to a London specialist who told me I am unresponsive to urso but I dont really know what that means as I am still prescribed it I currently have a "healthy liver" but for how much longer I don't know my symptoms have got progressively worse these last few months and I have requested an appointment with my consultant in January...but like you, I feel like I have had lack of information about pbc the hospital i am under now is much more informative but I still lack alot of knowledge about it . I've recently started to worry about my mortality, as my youngest is not even 2 and I would quite like to see him grow into a man before my demise ..maybe I was selfish having a child when I had already been diagnosed but I did consult with my liver doctor before conceiving and he seemed to think it would be ok...it wasn't my pregnancy was awful my baby had to be born nearly 2 months premature and I have since been sterilised but hes here now healthy and full of energy so it was good in the end my point is like you say I'm googling everything and there is lots of conflicting articles but my main concern is that pbc goes to terminal in 15-20 years that's a scary thought as I will only be 55 ....20 years after diagnosis
Cha cha my husband was an ursa responder for 14 years and then it stopped working. It was a scary time but he was lucky he received a transplant within 5 days of being lisited. It's early in his recovery, but he already feels so much better. I am not posting this to scare you, everyone is different. But to say ignore most of what you read, unless its a balanced medical article. Articles such that use terms such as 'terminal' in relatiin to PBC are unhelpful and scaremongering..
Find a clinician that specialises in PBC, as it's very miss understood. Once my husband was under a PBC specialist it made all the differance. Bearing in mind he was told he had months to survive by a none PBC specialist 15 years ago.!!!!
My advise is just live your life. My husband was well for 14 years, there where options when he needed them.
We have quite similar stories, although I was 33 when diagnosed and pregnant at the time, it was only discovered after I started itching terribly at 20-something weeks pregnant and my dr ordering a blood test which led to me being diagnosed with pbc. My baby was born 2 months early as well, and he’s now almost 1.5years old so still very young like yours.
If you’d like to chat let me know, I’m going through very similar x
Colefords not too far from me. Hows things at the mo? I’ve got my next consultant appointment through for the end of feb, will get to see how my lfts are doing and whether the urso is working, hopefully it is! X
I'm ok I saw my consultant yesterday my lfts are always high up there in there in the 500s and my liver stiffness is 6.1 so still within normal range but I do have an enlarged spleen too I have been put on bezafibrates so hopefully that helps the itching is driving me crazy I asked doc what stage I'm at as I've never been told but he still just said early stages which I'm looking at as positive as being diagnosed for 5 years now and an unresponder to urso I think I'm doing ok lol good luck with your appointment xx
Thank you, I’ll book my blood test for a few weeks time so it’s all up to date for when I see consultant. I had a fibroscan a year ago and the result was 9.5, my consultant said the disease was a bit further progressed than he’d have hoped to see but hopefully the urso will slow it down now x
I read the article on thePBC Foundation Facebook page.
The headline is misleading and is worded negatively, but sensationalism-is what sells newspapers.
Am I the only one who read this ‘death sentence’ as being the words from the lady concerned, it’s how she felt at diagnosis. Get past the headline and read the article it’s about what the lady was told and what she went through at the time of diagnosis and the article attempts to put that into some perspective.
I know myself it felt like I’d been given a death sentence when I walked out the consulting room in pieces 10 years ago, with no information or explanation given to me by the consultant , just a web site scribbled on a piece of paper, its time all that changed.
I also think there are many of us who’ve been given the wrong advice at some point so if this article makes people sit-up and take notice then I personally don’t think it’s all bad.
It links with the week before where a young father of two children lost his wife to autoimmune liver disease and is in her memory, raising funds. So maybe it’s time to open our hearts, minds and purse on this New Year’s Eve and donate.
Hi Beatrice l am 67 from Australia. I became so I'll with liver and kidney failure in 2008 but the Dr's in my city could not find what was wrong and just left me in the too hard basket. I found my way to a city with a great hospital and team of Drs and was diagnosed that first day with PBC in 2012. Started Urso and slowly got better and back to work. I live a pretty normal life just have to have one day a week on the couch to survive the fatigue. You will work out what is best for you.
I found family the worst it was hard for them to understand. And no real time frame. Their understanding has improved over the years.
I am now at stage 2 cirrhosis but l am still working 9 nursing shifts a fortnight. I do little housework only on a day off.
I do wish you all the best and keep positive. It will be alright and the group is always here for you Colleen xx
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