Re: Liver drug found ineffective in treating raredisease

[Guest guest]

Rnurse987@... wrote:

>in fact, I know it is

> doing

> something since all the LFT's are down since my husband has been

> taking it.

I was thinking about this fact the other day. If actigall brings down

LFT's (and I've seen research that supported that in addition to the

anecdotal evidence we have from this group) but doesn't improve

survival, am I hurting my chances of getting on the list by taking it,

while not improving my health? I'm going to be reevaluated pretty soon

for listing, and I'm thinking maybe it would be a good idea to go off of

it, at least for the time being.

athan

[Guest guest]

It's important to remember that these Urso studies are typically done

on people with advanced stages of PSC. Why? Because candidates for

the clinical trials are usually those with advanced damage...there

aren't that many people in the studies who have been diagnosed early

because there still aren't that many people diagnosed early in the

game. By the time people start participating in the studies, it's not

surprising then that Ursodiol would be of limited effectiveness. But,

for people in earlier stages, the jury is still out on the

effectiveness. We know that Urso isn't a cure. But, science also

tells us that improved liver function tests are more than just better

numbers. Clearly, something good is happening when the numbers

improve. The damage may not be reversed, but it may be slowed or

halted. If my LFTs can get better with Urso, then you can be sure that

I'm going to continue taking it until the downside outweighs the

benefit.

Tom

dx 11/99

johnathan george wrote:

[Guest guest]

Tom,

That is the exact same thing my DR told me today.

Anita

[Guest guest]

Anita and Tom

> Tom,

> That is the exact same thing my DR told me today.

>

> Anita

and I went to an ALF seminar a couple of weeks ago and one of the

teacher/transplant doctors at UCLA says that they are seriously

re-thinking that according to studies that a doctor at Mayo Clinic is

doing recognizes that higher doses of Actigall/Urso does contribute to

at least slowing down the progress of PSC (they have been using the

higher doses in the treatment of PBC for some time. I think just by

the comments of the people in this group that are taking the higher

doses (Phil my husband, for one) indicate that there is reason to

believe that this is true.

Peg