Re: How long have we got - revisited.

[Guest guest]

That discussion we had some weeks ago has disappeared and it wasn't getting us anywhere. But I was in contact with Dr. Chapman today, in preparation for our annual meeting in Oxford on the 21st, and I put your concerns to him. Remember that I was quoting one of Britain's leading hepatologists, Prof. , who said that 80% of us will not need a transplant. Dr. Chapman thinks that this is exaggerated but what he does have to say is still hopeful, especially for those who've been recently diagnosed.

He says around 50% of symptomatic patients will require transplant after 10 years in most series. (This obviously means that 50% won't require transplant 10 years after diagnosis.) "The prognosis for asymptomatic patients is clearly much better; at least 75% remain completely well at 15 years."

You will remember that in relation to the question of PSC recurring after transplant, somebody found a statement from Prof. Neuberger ( hepatologist at Queen Hospital, Birmingham, UK), that the rate of rPSC is 60% in his liver unit. He was emailed about this and queried that this did not match data elsewhere and he said it all depends how you define rPSC. Dr. Chapman says - "I believe that prof. Neuberger is referring to longer term follow up after 10 years - all the other figures are at 5 years. I am not aware it is published yet and is not confimred from other units."

Ivor

[Guest guest]

Ivor,Thanks so much for this update.I sure hope that my son is in the 50% that will not require a transplant in 10 years.I worry though that because my son was 21 at diagnosis that it will be more progressive.For those diagnosed in midlife, they might have already had it for many years.So........ bring on the research, we still need more effective treatment.LeeThat discussion we had some weeks ago has disappeared and it wasn't getting us anywhere. But I was in contact with Dr. Chapman today, in preparation for our annual meeting in Oxford on the 21st, and I put your concerns to him. Remember that I was quoting one of Britain's leading hepatologists, Prof. , who said that 80% of us will not need a transplant.  Dr. Chapman thinks that this is exaggerated but what he does have to say is still hopeful, especially for those who've been recently diagnosed. He says around 50% of symptomatic patients will require transplant after 10 years in most series. (This obviously means that 50% won't require transplant 10 years after diagnosis.) "The prognosis for asymptomatic patients is clearly much better; at least 75% remain completely well at 15 years."