Re: MY MESSAGES-BOBBY UPDATE

[Guest guest]

Dear Anne;

I am so sorry to hear that Bobby's PSC is back. I just can't fathom

this disease and how devastating it can be. My prayers will be that

Bobby's second PSC will be slow to progress and that researchers

will find a cure SOON! Meanwhile, please keep up your fighting

spirit.

Best wishes,

Dave

(father of (19); PSC 07/03; UC 08/03)

> .....the PSC is back...

[Guest guest]

Thanks, Dave...I have to admit when the Radiologist came out and vaguely

said what he DIDN'T find and casually mentioned narrowing of the

ducts...I asked, " Is his PSC back??? " He looked shocked...said yes and

turned around and left...I grabbed another radiologist I had talked to

earlier and she stayed with me..I fell to pieces probably the first time

since 2000...I just couldn't bear telling him this soon after

transplant...but we've both recovered and the fight is on!!!ha

Re: MY MESSAGES-BOBBY UPDATE

Dear Anne;

I am so sorry to hear that Bobby's PSC is back. I just can't fathom

this disease and how devastating it can be. My prayers will be that

Bobby's second PSC will be slow to progress and that researchers

will find a cure SOON! Meanwhile, please keep up your fighting

spirit.

Best wishes,

Dave

(father of (19); PSC 07/03; UC 08/03)

> .....the PSC is back...

[Guest guest]

,

I am sorry to hear of Bobby's rapid return of PSC. I am becoming

more and more convinced that the recurrance rate of PSC is much

higher than the 20% or so reported by various studies. This

impression is not based on any scientific data but rather from what

seems to be a high recurrance in this group. I have a couple of

theories on why that is. 1) The medical community is becoming more

adept at identifying PSC and in earler stages. 2) Those that

participate in this group with recurrent PSC tend to stay active in

the group and thus seems to skew the numbers. I state this theory

not to scare people but am curious if others have come to similar

conclusions.

Seems a good subject for a Poll of PSC patients who have previously

been transplanted. I will post one soon. Caregivers should feel

free to answer on behalf of their loved one if appropriate.

in Seattle

[Guest guest]

Hi ;

I also don't want to scare anyone, but I think you are right about

the medical community getting better at detecting recurrence. In the

recent Falk Symposium, Neuberger estimates that recurrence of

primary sclerosing cholangitis (PSC) occurs in up to 60% of

transplanted patients!

Falk Symposium 142

GASTROENTEROLOGY WEEK FREIBURG 2004 (Part I)

AUTOIMMUNE LIVER DISEASE

Freiburg (Germany)

October 12 - 13, 2004

Liver transplantation for autoimmune liver diseases

Neuberger

Queen Hospital, Birmingham, U.K.

Some of his earlier studies suggest that being male and having an

intact colon are risk factors for recurrence. Note that his estimate

of recurrence rate has gone up from 36% in 2002 to ~60% in 2004:

Lancet. 2002 Dec 14;360(9349):1943-4.

Risk factors for recurrence of primary sclerosing cholangitis of

liver allograft.

Vera A, Moledina S, Gunson B, Hubscher S, Mirza D, Olliff S,

Neuberger J.

Liver Unit, Queen Hospital, B15 2TH, Birmingham, UK.

Primary sclerosing cholangitis (PSC) is a disease of unknown cause

that effects the biliary tree and is closely associated with

inflammatory bowel disease. We did a retrospective analysis of the

risk factors associated with recurrence of PSC in an allograft after

liver transplantation. Recurrence of disease, assessed by liver

histology or imaging the biliary tree, occurred in 56 of 152

patients (37%) at a median of 36 months (range 1.4-120 months).

Multivariate analysis showed that being male (relative risk 1.2, 95%

CI 0.73-2.15) and an intact colon before transplantation (8.7, 1.19-

64.48) were associated with recurrence. These observations could

help elucidate the pathogenesis of the disease.

PMID: 12493264

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

> I have a couple of theories on why that is. 1) The medical

community is becoming more adept at identifying PSC and in earler

stages. 2) Those that participate in this group with recurrent PSC

tend to stay active in the group and thus seems to skew the

numbers. I state this theory not to scare people but am curious if

others have come to similar conclusions.