Tim (UK) re: urso post tx

[Guest guest]

Tim, many liver transplantees *ARE* in fact kept on Urso/Actigall post-tx,

but personally, we fought tooth & nail to get my husband's tx surgeons to

agree to do this for him ( & even then, they Rxd Jim a paltry amount... maybe

to get me to pipe down about it?). Perhaps Jim's surgeons/tx center are

among those in your post who espouse a " scant evidence " ideology?

But we're happy to report we recently succeeded -- finally! Over 5 years

post-transplant! -- in upping Jim's dose, to high-dose (but not as

re-defined as safe, new high dose levels in Dr. Chapman's report, from

Ivor's transcription of the '06 UK meeting). This does my heart good, as

there are so many reports out there of PSC recidivism, with seemingly

increasing percentages of recurrence (depending on the study). Call it

simplistic thinking, but thinner bile would seem a good thing, even to the

transplanted PSCer/Ibder.

We accomplished Jim's newer, high dose by going down a different road, with

Jim's " local " hepatologist. I always believed in the strength of all the

anecdotal evidence of this group, however Ivor's transcription to this group

of that '06 UK meeting (where Dr. Chapman reported on this topic) absolutely

cinched it, at least it did for Jim & me. Some may believe the evidence is

merely anecdotal (or scant), but it seems to be inching closer to empirical,

since several studies are finally in (that weren't completed 5 years ago).

Now, to conclude w/the following which was posted by the " other " Tim, Tim

Romlein, to the livertxPSC " subgroup " of our PSC support group (are you

going to join us there, if you haven't already?), as we recently had quite

the discussion about this same topic of post-tx urso/actigall (Tim, I hope

you don't mind my quoting you here? But you said it so well over there!).

" Urso has also been observed to reduce the risk of pre-cancerous changes in

the colon and prostate. Since many with PSC have IBD and an increased risk

of colon cancer, reducing the risk with urso makes sense. I don't know if

any dosage studies have been done to determine how much urso should be taken

to be effective. (I probably should review the 55 papers that reference

cancer in the urso section of scientific literature database

- http://home.insightbb.com/~rhodesdavid/urso.htm - to find what the current

state of research might advise, but I haven't found the time to do that yet.

There might be other nuggets of information there that would increase the

rational for taking urso). "

Tim R

Wishing you all the best as you continue to recover, Tim, & hoping things

only get better & better for you from here on out! You're right, not that

your hospital care hasn't been fantastic, but it'll be wonderful when you

finally get to go home-sweet-home!

Maureen (wife of Jim, UC '84, PSC '96, living donor liver Tx from son ,

12/7/01; post-tx skin cancer complications; watching colon very closely)