PBC life rates

Can one be living many years ...all life...with PBC..without needing transplant?do you know the elder survivors of PBC?

[Wass71]

Hi,

There are many people on the PBC foundation HU forum that are living well with PBC. It depends on when you are diagnosed, in terms of damage to the liver, if you respond to treatment (of which there are more options now than when I was diagnosed). The PBC foundation have done a layman's version on EASL (European association for the study of the liver) guidelines on the diagnosis and treatment of PBC. The guidance says if you can maintain your Alk phos under 200 with the use of UDCA or newer meds then you are responding to treatment and are unlikely to go on to develop cirrhosis.

I have recently had a transplant, I'm 48, I was diagnosed in 2006-7 (blood test in November 2006, biopsy in February 2007). However I'm fairly sure I had it from about 2000-1. So my liver lasted a good while (I did not respond to treatment, so even in those circumstances it is a slow progressing illness).

I hope you are receiving treatment, and that your body responds. Be your own advocate, become knowledgeable, use the BLT website, and sign up to the PBC foundation (they have an excellent app, and community able to offer support).

Wishing you well

Wass x

[Hidden in reply to Wass71]

Thank you a lot!i m glad you are well ,but unfortunatelly for me i live in a country where there is no support at all for such deseases,it s almost impossible to get a liver on transplant,so for the moment i wm taking care alone,and hope to respond to treatment.

[Gordes]

Hello I’m not sure how useful this is because she died 20 years ago but my mother was diagnosed with PBC in her mid 60s & lived to be 85 - her liver specialist thought she had probably had it for sometime prior to diagnosis.

She gave up all alcohol & was very careful with her diet - including the amount she ate.

If it’s any comfort in her funeral instructions she asked for donations to osteo arthritis research as in her words it plagued her life more than her liver disease.

[Hidden in reply to Gordes]

It is very useful because as your mother,my grandmother was diagnoised with some form of cirosis in the seventies,she lived till 95,no medication.thank you for answering.

[GrittyReads]

My consultant told me not to worry, given the increased understanding and knowledge - now - about PBC, plus all the treatments and testing.

He said: 'Most people die with PBC … not because of it."

[Hidden]

Hope no one ever dies of PBC !like the hepatiti C.it s all curable now .how would have think some time ago?