Re: Hello, I'm 17 and I'm New To This Group; 6MP

[Guest guest]

Thanks again for all the replies guys. I'm still having a tough

time with the whole mental aspect of the diagnoisis. I keep telling

myself " Positive Attitude, Positive Attitude " and sometimes I feel

okay about it all and I can keep a positive outlook, but other times

I think about all the possibilites down the road. However, I think

this early on, it's okay that I'm dealing with these feelings, as it

has really been only a month since I have been unofficially

diagnoised with the PSC. I do also think I will feel better

mentally about everything as time goes on. My mom is working today

to get me an appointment with a liver specialist at 's Hopkins

in Baltimore, as well appointments with several other local

doctors. We are very pleased with my gastro, but the bottom line is

he's a pediatric gastro, so we would like to talk with someone who

has much more experience dealing with the liver.

A couple of things: my mom already has a notebook going, so we have

been keeping track of everything, and I mean everything, in there.

I'm sure I could get my hands on any of the blood work or anything

else from my gastro or normal pediatric doctor. We also probably

have a good amount of the stuff here at home, but we are so

overwhelmed with medical paper work I'm just not sure where it all

is. My mom could probably find everything though.

As for the 6MP. The plan from the original diagnoisis of my UC was

to start off with the steriods while also introducing the 6MP into

my system. The 6MP will eventually take over and do the job the

steriods are doing, but won't have the side effects that the

steriods do bring with them. However, from what I understand it

takes a couple of months of taking the 6MP for it to get fully into

your system and start working, so that's why I am taking both at the

same time. I first started at 40 mg's of the pred per day and it

has been reduced by 5 mg's every two weeks. I'm currently down to

25 mg's of the pred. During that time I have also been taking a 50

mg pill of the 6MP 1x per day. By the time the steriods are down to

around 10 mg's per day, I believe my 6MP dosage will be bumped up to

1 and a half pills per day at the 50 mg level. I hope this helps.

I also have a question for anyone who can help me, is Actigall the

same thing as Urso? My prescriptions from the doctor say Actigall,

but the prescription bottle says Urso-something. Also, what exactly

does this stuff do in terms of treating the PSC, does it do anything

at all? Thanks for the help.

[Guest guest]

Dear ;

Hang in there; it does tend to get better after the shock of

diagnosis is over.

Actigall is the same as urso (ursodiol; ursodeoxycholic acid).

Ursodiol is a bile acid originally identified in bear bile. It is

thought to protect the liver against toxic bile acids. In primary

biliary cirrhosis is has been shown to delay progression of the

disease. In primary sclerosing cholangitis it has been shown (at high

dose) to improve liver biochemistry (i.e. liver function tests), but

it has not yet been conclusively proven to delay disease progression

[trials are still in progress to test this point]. In PSC ursodiol

has also been shown to provide some protection against cancer of the

liver and colon.

A very detailed article on ursodiol in hepatobiliary disease can be

found at:

http://www.annals.org/cgi/content/full/121/3/207

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

> I also have a question for anyone who can help me, is Actigall the

same thing as Urso? My prescriptions from the doctor say Actigall,

but the prescription bottle says Urso-something. Also, what exactly

does this stuff do in terms of treating the PSC, does it do anything

at all?