RE: Re: ERCP confirms PSC/Jed

[Guest guest]

Jsut a note that my 9 year old son takes 4- 250mg (1000) a day. He was in pain with abdominal cramping and discomfort for weeks with extremely elevated liver function tests, elevated GGT and elevated Sed. After 3 days on Urso , the pain subsided and his labs were status quo. 6 months later, still no reoccurrence of the pain. They say it works on some and not others but for him, it was God sent....

" Chaim Boermeester "

" Chaim Boermeester "

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06/24/2007 11:37 AM

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RE: Re: ERCP confirms PSC/Jed

Jed,

500mg is low. I take 2400mg a day (between 25 to 30mg/kg). I agree that it might not be wise to start a relationship with a doctor on the wrong foot, but it is still your health, not his. It has not been proven that UDCA prolongs life in PSC patients. It does seem to help to keep the bloodwork in check though. My numbers have gone way down, compared to what it was before I took UDCA. It will be hard to prove that it is because of UDCA, but there are quite some people on this forum that feel the same about this. My hepatologist gave it to me saying that he will be happy if it helps, and if it doesn't help it doesn't do any harm either. It seems to help me.

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Jed

Sent: Sunday, June 24, 2007 17:45

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Subject: Re: ERCP confirms PSC/Jed

" I'm on a very low dose URSO, 500mg a day, about 5 mg/kg/day. "

Ian,

I'm confused, is 500mg a day low? That seems like quite a bit. I'm not

sure if I should ask my doctor to put me on URSO. He seemed 100% sure

that it has not made a difference and I don't want to start out our

relationship by trying to prescribe my own meds. But at the same time i

don't want to miss out on anything that can help me.

Jed