Re: urso

[Guest guest]

>

> could you tell me how high the dosage was in this study? does this mean

> that urso is useless for psc? my daughter has been on it for a very

> long time . years. is this going to make her progress faster? i'm

> confused.

==========================

It distresses me to see the level of frantic questions which have been triggered

by the

news of the Urso study being brought to an end. While my own personal

experiences are

hardly definitive, I would like to offer them as an example which may (or may

not!) ease a

few fears.

I was officially diagnosed with PSC in 2001. Surgical notes from 1994 indicated

beaded

ducts, but nobody told us that at the time. We just kept on wondering why I

continued to

have " gall bladder attacks " when I no longer had a gall bladder. Turns out,

they were

actually cholangitis attacks.

Anyway, I tried Urso in Nov. 2001 but couldn't tolerate it (severe ab. pain,

nausea,

diarrhea, & night terrors). So, I am one of the very few in this group who has

NOT been

taking Urso. My liver enzymes stay very normal except when the ducts begin to

close

again, and then they just barely rise a smidgen .... generally staying well

within " normal "

limits. I've learned that those numbers mean little to nothing in my case!! An

ERCP to

stretch the ducts, a good round of antibiotics for the cholangitis, and I'm fine

again.

This summer we have learned that I have 5 esophageal varices (the bulging veins,

caused

by portal hypertension, which may rupture and cause a major bleeding episode).

Varices

are a part and parcel of liver disease. It doesn't seem to me that taking Urso

could

possibly prevent them! They simply come with the PSC territory, as does

cirrhosis, portal

hypertension, splenomegaly, and other assorted " invisible " complications

(meaning that

you can't see them as you can see jaundice or some of the HE symptoms).

There was a discussion sometime in the last year or two which brought up the

question of

whether Urso really kept the PSC under control, or if it is possible for the PSC

to behave

itself fairly well without that medication. I've searched but can't find those

messages.

Perhaps someone else remembers? ? Arne?

As I've said, I'm just one case .... there may or may not be any value in what I

have

experienced. But, for what it's worth, I certainly have not progressed any

faster than those

who have been on Urso. I've actually progressed slower than some.

I honestly do not believe that going off Urso will make the disease progress

faster. In fact,

I've often wondered how a badly compromised liver could manage to metabolize

such

huge doses of medication in the first place. (I know ... some of you will

consider that to

be heresy! But, it's simply my thoughts and not being put forth as medical

proof!!!)

Take a few deep breaths and deal with the things in life which you CAN change!!

Because

we have this disease, we are much more keenly aware of where the cutting edge of

research is, and the poignancy and the emotions can run very high indeed.

Here, in SC, we have a magnificent summer day .... blue skies, a light breeze,

and a very

pleasant 83 degree temp outside. But whatever the weather where you are, take a

bit of

time to count your blessings. I guarantee you that there are far more of them

surrounding

you than you realize! Start with, " I am alive! "

Regards,

Carolyn B. in SC

[Guest guest]

-----Original

Message-----

It distresses me to see the level of frantic questions which have

been triggered by the news of the Urso study being brought to an end.

Carolyn, I couldn’t

agree with you more! What concerns

me the most, is people deciding on their own or allowing others to talk them into

taking it or playing with the dose when their doctors have advised them to stop! No matter how wise (either book smart or

experienced) we think we are, we aren’t doctors. Don’t mess with the dose, take something or stop taking something - no matter what it is - prescribed,

herb, mineral, vitamin, supplement etc without talking to your doctor first! You may think it won’t harm you,

but any or all of these things might. Plus you run the risk of not being listed

because you didn’t follow orders.

Please, talk to your doctor before you do anything.

But, for what it's worth, I certainly have not progressed any faster

than those who have been on Urso. I've actually

progressed slower than some.

And it sounds like that in itself

might be the case against URSO. We’ll

know more when the study comes out, until it does, it might be wise to just chill

out and wait. Then we can sit down

with our doctors and have a good chat.

JMHO Barb in

Texas - Together in the Fight.... Whatever it

Takes!

_

[Guest guest]

Tim,Excellent idea to go on a roadtrip to DC to meet the power brokers to medical research funding. If you have experience, then I think you should be one of the people to go. Who else should go? I would recommend a caregiver as well as often the caregivers can speak almost better than those of us with PSC. I think this would be a very important trip, so a good deal of thought should go into it.Marie

Don't get caught with egg on your face. Play chicktionary!