Re: Tim (UK) re: urso post tx

[Guest guest]

Tina,

I think that we are on Urso because even after transplant, PSC can re-occur. I would hate to have bile back up into my new liver and start the whole process over again. My past G.I. told me the Urso thins the bile so it flows easily, his term was "it keeps the bile slick". I have never had any adverse effects from this drug, so I figure I'll take it as a preventative measure.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

Tina,

I think that we are on Urso because even after transplant, PSC can re-occur. I would hate to have bile back up into my new liver and start the whole process over again. My past G.I. told me the Urso thins the bile so it flows easily, his term was "it keeps the bile slick". I have never had any adverse effects from this drug, so I figure I'll take it as a preventative measure.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

Tina,

I think that we are on Urso because even after transplant, PSC can re-occur. I would hate to have bile back up into my new liver and start the whole process over again. My past G.I. told me the Urso thins the bile so it flows easily, his term was "it keeps the bile slick". I have never had any adverse effects from this drug, so I figure I'll take it as a preventative measure.

Take Care

MizKitSee what's free at AOL.com.

[Guest guest]

Why is your husband still on Urso after transplant?. My husband was on it for a year and the surgeon's took him off of it. Their and our motto is, the less meds you are on the better off you are. He was transplanted two years ago and his numbers are excellent. Thanks Tina

Tim (UK) re: urso post tx

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 toagree to do this for him ( & even then, they Rxd Jim a paltry amount... maybeto get me to pipe down about it?). Perhaps Jim's surgeons/tx center areamong those in your post who espouse a "scant evidence" ideology? But we're happy to report we recently succeeded -- finally! Over 5 yearspost-transplant! -- in upping Jim's dose, to high-dose (but not asre-defined as safe, new high dose levels in Dr. Chapman's report, fromIvor's transcription of the '06 UK meeting). This does my heart good, asthere are so many reports out there of PSC recidivism, with seeminglyincreasing percentages of recurrence (depending on the study). Call itsimplistic thinking, but thinner bile would seem a good thing, even to thetransplanted PSCer/Ibder.We accomplished Jim's newer, high dose

by going down a different road, withJim's "local" hepatologist. I always believed in the strength of all theanecdotal evidence of this group, however Ivor's transcription to this groupof that '06 UK meeting (where Dr. Chapman reported on this topic) absolutelycinched it, at least it did for Jim & me. Some may believe the evidence ismerely 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, TimRomlein, to the livertxPSC "subgroup" of our PSC support group (are yougoing to join us there, if you haven't already?), as we recently had quitethe discussion about this same topic of post-tx urso/actigall (Tim, I hopeyou 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

inthe colon and prostate. Since many with PSC have IBD and an increased riskof colon cancer, reducing the risk with urso makes sense. I don't know ifany dosage studies have been done to determine how much urso should be takento be effective. (I probably should review the 55 papers that referencecancer in the urso section of scientific literature database- http://home. insightbb. com/~rhodesdavid /urso.htm - to find what the currentstate 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 therational for taking urso)."Tim R Wishing you all the best as you continue to recover, Tim, & hoping thingsonly get better & better for you from here on out! You're right, not thatyour hospital care hasn't been fantastic, but it'll be

wonderful when youfinally 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)

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