High Dose Urso Study

[Guest guest]

I realize I have not posted for awhile and for that I apologize but I

do keep up with the messages when my schedule allows. I just wanted

to share some information I was given today as a participant in the

Multi-Center High Dose Urso Study coordinated by The Mayo Clinic

(through Dr. Lindor). This study, originally slated for 5 years (I

just finished year 5) was extended last year to gather more data.

The original plan was to go another two years.

I was just informed that effective immediately all patients are being

taken off of the Urso or Placebo doses they have been receiving.

This is due to there being no evidence that that high dose urso was

having any benefit. They will continue to follow us for a year to

study the impact to our lab results. I asked my study coordinator if

they will continue to prescribe Urso to PSC patients outside of the

study and it appears the conclusion is there is no tangible benefit

and therefore they are not recommending PSC patients continue taking

Urso.

While this news is dissapointing it does not come to a particular

shock to me since previous studies had been inconclusive at best. I

would be curious to know if other study participants have yet

received this news. Supposedly I will receive an official letter in

the coming days and be told if I was on " real " Urso or a placebo.

in Seattle

UC 1991, PSC 2001 - Stage IV