Re: We are ignorant - can you help us?

[Guest guest]

Dear Kendra,

I think these posting by Ricky Safer give the best synopsis,

" Dear All: Dr. Lindor was kind enough to take the time to answer my email, asking him for any information that he could share with our group about the results of his Urso study. I'm sharing his note with you:

" Thanks for the note. We are analyzing the data now more fully. We did find a three fold increased risk of varices and OLT/death in the URSO group to our surprise. We are asking people to go off the high dose now. We will have more to say later as we complete our analysis, but these are the data behind the recommendation. "

It looks like we'll have to wait until his study is written up in order to know exactly what this means for each of us. RickyPSC 2003 "

&

" Hi Marie, It looks like Carolyn answered your question re: OLT. Re: staying on a lower dose of urso....Certainly don't make your decision based on whatever I tell you. Please check with your hepatologist to see what he/she says. I checked with my hepatologist, and although the data has not been published, he recommended that I go back to the lower dose of urso (max. 15 mg/kg). At this point, he is not concerned about the lower dose of urso, but once the study is published, we'll revisit this topic again. I would definitely check with your hep. Hope you're feeling OK.

Ricky " Ian (52) PSC 89

Hello fellow PSCers,My husband was diagnosed with UC & PSC about a year and a half ago. I joined this group to kind of keep up with information, but we both lead busy life styles and I only read my e-mail digests about once a week.

(Praise the Lord that my husband is symptom-free and is able to lead a normal life at this time!)I am very troubled by this Dr. Lindor/Urso study thing that keeps on popping up. I don't want to presume that I know what is going on here,

and I have tried reading older messages to get the full story. Could someone give me a clear update of what happened, or a link to a press release? We have an appointment with Dr. Reddy at the University of Chicago in August, and I wanted to be able to have an informed

discussion with him about this topic.Thank you!Kendra -- Ian Cribb P.Eng.