Man, am I tired of THIS disease!!!

[Guest guest]

Greetings all,

I am looking for some feedback as to whether anyone has some advice

for me. I am a 43 y/o male. I was diagnosed with PSC in 1991 (after

10 years of suffering from " some kind " of liver disease). In 1992 I

had a liver transplant. That liver lasted 10 days and due to

infection or rejection (they aren't sure which) I had to be put back

on the list for another transpant. Thankfully, they found another

liver and I had my second transplant in 10 days. Since that time, I

have been quite well though the bloodwork has caused my hepatoagist

concerns. He was not sure whether the elevated readings were caused

by mild chronic rejection or a recurrence of the PSC. Well, I had an

MRCP done in late May, and you gussed it, the PSC is back.

The good news is there has not been much progression and I still feel

quite well. Although I have learned feeling well is no guarantee as I

was SO well in 1992 I not only worked but put in overtime the day I

was called for my transplant.

I know the medication of choice of MY hepatolahist for battling PSC

is Ursodiol which I simply can not tolerate in ANY amount. Without

getting graphic, let's say it confines me to the house. So basicly I

am left with a scenario where I am caught up with a disease which is

very difficult to battle. Does anyone know of alternate PSC

treatments that have been effective. Also, literature I have seen

seems to hint at the 10 year number from diagnosis to liver

failure...any feedback on this number?

Any and all info is greatly appreciated.

Be well,

Jim.