Urso, PBC and labs

[Guest guest]

Hi everyone,

I have a couple things to post about -- I'll try to

keep this brief.

The Enbrel study goes well -- they changed how I am

giving myself the injections -- used to be 1cc of

fluid with 25 mg of enbrel and one injection.

Now I am using 3 ccs of fluid, mixing with 30 mg of

Enbrel (3 vials with 10mg per) and then drwing off 25

mg of the drug and giving myself 2 injections. It is

making a huge difference. In two weeks my ALT was in a

normal range and my Alk Phos dropped from 362 to 219!

I started on Urso 2 weeks ago and now my ALT and AST

are both normal and my Alk Phos dropped to 174!

I am having a lot of trouble with the Urso, though. It

have a lot of stomach pain, and about an hour after

taking it, I get tightness/pain in my URQ. Does this

happen to anyone else? Besides that, I get wicked runs

from teh stuff. Will these symptoms subside after a

while? I am in the 3rd week, and am currently taking 2

capsules in the am and 3 in the pm (working up to 3

and 3). I'm not even sure what my dosage is woring up

to.

Also, one of my aunt's has been going through hell

trying to figure out why she has sometime elevated

liver enzymes. The doctors now think that she has PBC.

Wait till I tell Kaplan about this. Just unbelievable.

Anyway, can you all share some URLs where she might

find out more and the address for a PBC support group?

Thanks,

COlleen

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[Guest guest]

Colleen,

Is it possible for them to change you to Actigall instead of the URSO. Phil

has no side effects from the Actigall. I know others have had nausea

problems. Do you take asulfadine for UC you might want to up the dosage of

that for awhile until the runs stop. Just some ideas don't know how valid

they are.

Peg, wife of Phil (58), UC 30 years, dx PSC 12/98, listed-status

3-UCLA-2/2000, living Los Angeles suburbs, CA

[Guest guest]

-Thanks Peg,

I hadn't thought about the generic -- brand name

aspect of this. I haven't taken Azulfidine in years --

I'm on Asacol -- couldn't take the sulfa headaches.

Until Dr. kaplan gets back from China, I think I am

stuck. But that is OK. My insurance would likely

charge me $30 for the Actigall vs. Urso. After we get

back from Germany I will look into the switch -- Jens

has much better insurance.

Thanks,

Colleen

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