stage 4 PBC

[tealmust]

Hello again,

I was just wondering if anyone had a guess on how long you can live with pbc once you are in stage 4 without a transplant? I know it is probably different for everyone but I would like any feedback on this I can get.

Thanks

[4pjx__]

Hi tealmust! From the information I have read it is possible to go on in stage 4 for 10 or 20 years. Of course this depends on how well treatments are working for you. It's also possible to need a transplant after just a few months or a few years. If you are feeling pretty good and your labs are coming back resonably good then try to be optimistic that you will go on for quite a few years without a transplant. Thst's really all we can do anyway. ❤

Pam

[tealmust in reply to 4pjx__]

Thank you very much for your feedback. I try to stay positive. I have a lot of anxiety issues that make me think about things and I just like to ask questions because I want to know what to expect and sometimes the answers I get calm my anxiety for a little while. Probably crazy but works for me.

Thank you for your time!

[4pjx__ in reply to tealmust]

I get it! I was diagnosed at stage 3 about 2 and 1/2 years ago. I have my fair share of anxiety about my condition as well. There are in fact a few women on one of the Facebook groups that have been in stage 4 for at least 15 years or more. So there is definitely hope.

[iagra in reply to 4pjx__]

Thanks, Pam! This is so good to know! We all think what's ahead.

[Karaliz]

Hi tealmust

I’m 54, diagnosed at 38 ( stage 1-2 on biopsy ) and developed cirrhosis ( stage 4) 7 years ago. I work 3 long days as a case manager / nurse and although deal with the complications of a cirrhotic liver on a daily basis , am really able to get on with my life.

If cirrhosis is compensated ( as in my case) one can jog along quite well. However once it becomes decompensated, the story is very different.

Just have to hope for the best and smell the roses ( or gum leaves and wattle where I live down under !)

Take care

Karen

[Sydgal in reply to Karaliz]

Hi Karen from down under 🙂

Besides URSO are you taking anything else for PBC?

Thanks

[Karaliz in reply to Sydgal]

Hi Sydgal

How are you going ?

I was only a partial responder to Urso and after 7 years became very unwell. My Dr recruited me into the Obeticholic Acid trial in 2013. I was randomised to the placebo arm for the first year during which my LFTs deteriorated further. However once I was allocated 10mgs of OCA the second year of the trial, my disease stabilised and I have continued to take OCA ever since. Unfortunately although it was cleared by the TGA here in Australia it is not available due to the cost of adding it to the PBS. My Dr is able to secure it for me on “ compassionate grounds “ .

Hope you’re travelling ok.

Karen

[cazer]

I was first suddenly very ill in 1998 when pregnant and suffering with glandular fever....they knew there was something wrong with my liver.. A biopsy the following July after having my baby showed it was pbc and stage 4....

Cut to 2017.... I was assessed for transplant.. and was lucky enough to be called after only 6 weeks.

So according to me that's almost 20 years.. and I'm living proof of that...

I hope that gives you some reassurance,...

Please also bear in mind that a stage 4 is only of the bits they biopsy... Which will usually be the most damage bits they pick... To test...

We can manage with a small portion of healthy liver... So please remember this..

You are right to want to know what's going on.. And have an idea where its going..

Positivity is very important.. Do anything and everything you can that makes you feel happy...

Enjoy each day..

Very best wishes cazer xx

[Bama_girl in reply to cazer]

Thanks for sharing!🤗

[Karaliz]

Great comment cazer

Just want to add though that cirrhosis is evident on ultrasound , MRI and my high scoring fibroscan ( not just biopsy )

Take care

Karen

[cazer in reply to Karaliz]

Yeah, thanks, had biopsy to confirm diagnosis but lots of scans etc as well

[Danteskid]

Hi, tealmust,

I was diagnosed at stage 4 inJune of 2018. I continue to be stable. It is very hard to stay calm all the time, especially on the days when you just don’t feel well. I get it😊 Deep breaths, you are not alone. There are many who have been stage 4 for 20 years and are still doing well. Eat healthy, get some exercise, enjoy your life. As the saying goes...”We die only once, but we get to live every single day”...(..something like that)😉 I wish you many happy, beautiful days. ❤️ Jackie

[ninjagirlwebb]

When I was first diagnosed, I read a research paper where there was a model predicting life expectancy based on blood work results.

Ask your doctor to see how this might work for you:

mayoclinic.org/medical-prof...

[AB12]

Hi my story got diagnosed 2015 and 2018 latest scans showed stage 4 with bloods worsening but compensated cirrhosis had no real side affects felt ok. Summer 2019 went downhill serious varice bleeds x 2 in ICU and a little Ascites. Assessed for transplant Oct and just before Xmas had transplant....7 weeks on list and now one month post transplant. I asked at assessment if I didnt have transplant my outlook and was told max 3 years but very important this is me and everyone is different. For transplant they want you to be as fit as you can before which I was.....a month post walking well, trying to eat as much protein as I can but to flag it was a massive operation but I am so grateful for my Christmas present. I was sub 50 when disgnosed and i have read younger you are tends to be more aggressive, I didnt respond to Urso and OCA didnt seem to work either. Many people stay compensated for years but for me it was 18 months.

[kimphoebe in reply to AB12]

Hi there

Your story bit like mine dx 2012 stage 1 didn’t respond to uso so now got compensated cirrhosis. It just seems all a bit quick, I also dx at 50 and told it could be more aggressive the younger you are.