RE: Why I am cautious about stopping urso without more info.

July 2, 2008

Thanks, , that's very interesting and helpful. Isn't your son

also taking fish oils? Do I remember that they have a similar

mechanism? Also, what mg/kg dose is on and are you thinking of

lowering it at all? Thanks,

Nina in Philly

> I am not going to do such an experiment on my son without some

> careful research, and this means first seeing the data from the urso

> trial.

July 2, 2008

Thanks so much for your input Dave.I value it highly.I'm glad to hear that you are on the same page as my husband and I, and so we wait..LeeBill's Dr. didn't even mention it on Monday when he saw him. He is more concerned with the cipro he takes everyday.Maybe he wasn't yet aware of the urso issue?Dear All;I'd like to express my specific concern about my son stopping taking ursodiol without more information. My son is not only taking ursodiol but is also taking rifampin (rifampicin) by prescription from his hepatologist. The rifampin controls his itching (pruritus) very well. There is good theoretical reason why the combination of rifampin and ursodiol should be better than ursodiol alone. Please read these papers to find out why:

July 2, 2008

Thanks so much for your input Dave.I value it highly.I'm glad to hear that you are on the same page as my husband and I, and so we wait..LeeBill's Dr. didn't even mention it on Monday when he saw him. He is more concerned with the cipro he takes everyday.Maybe he wasn't yet aware of the urso issue?Dear All;I'd like to express my specific concern about my son stopping taking ursodiol without more information. My son is not only taking ursodiol but is also taking rifampin (rifampicin) by prescription from his hepatologist. The rifampin controls his itching (pruritus) very well. There is good theoretical reason why the combination of rifampin and ursodiol should be better than ursodiol alone. Please read these papers to find out why:

July 2, 2008

Thanks so much for your input Dave.I value it highly.I'm glad to hear that you are on the same page as my husband and I, and so we wait..LeeBill's Dr. didn't even mention it on Monday when he saw him. He is more concerned with the cipro he takes everyday.Maybe he wasn't yet aware of the urso issue?Dear All;I'd like to express my specific concern about my son stopping taking ursodiol without more information. My son is not only taking ursodiol but is also taking rifampin (rifampicin) by prescription from his hepatologist. The rifampin controls his itching (pruritus) very well. There is good theoretical reason why the combination of rifampin and ursodiol should be better than ursodiol alone. Please read these papers to find out why:

July 2, 2008

Dear Dave,

Thank you sooo much for sharing your thoughts on the urso trial, as we all

look up to your expertise and judgment. I just wrote a short email to Dr.

Lindor on behalf of all the PSCers and caregivers in PSC Partners Seeking a

Cure. I briefly explained to Dr. Lindor the extreme concern/stress that

this urso trial is causing among our group. I just asked him if he could

possibly send a brief response, explaining the adverse effects of urso that

they found, and describing some of the data that led up to his decision to

advise his patients/study volunteers to immediately stop taking urso. I

don't know if Dr. Lindor will have time to send an answer, but if he does,

I'll share his response with the entire group.

Ricky

PSC 2003

Why I am cautious about stopping urso without more

info.

Dear All;

I'd like to express my specific concern about my son stopping taking

I am not going to do such an experiment on my son without some

careful research, and this means first seeing the data from the urso

trial.

Best regards,

Dave

(father of (23); PSC 07/03; UC 08/03)

------------------------------------

July 2, 2008

Hi Nina;

's medications and time-trends in his LFT's are posted in the "photos" section .... I think this is the correct URL:

http://health.ph.groups.yahoo.com/group//photos/view/3f8d?b=1

Yes, he's on fish oils as well as high-dose ursodiol (26 mg/kg/day), rifampin, asacol, centrum silver and extra folic acid. We think that the fish oils are also affecting bile transporter expression, but may be having additional anti-inflammatory effects.

Why should we change his medication when you see these trends in LFT's? It would take a lot to convince me to have him stop taking ursodiol, including a careful discussion about risks of colon cancer and cholangiocarcinoma.

Best regards,

Dave R.

> Thanks, , that's very interesting and helpful. Isn't your son also taking fish oils? Do I remember that they have a similar mechanism? Also, what mg/kg dose is on and are you thinking of lowering it at all?

July 2, 2008

Dear & All,

Our 11-yo son who got PSC at age 6 in 7/2003 was diagnosed with UC in

April 2008 (for now, I think it will change to Chrohn's later because

at the ERCP in Feb 2008 his duodenum had looked abnormal although the

biopsies then were ok).

So now our son is on urso 12x150 mg (32 mg per kg per day), mesalazine

4x400 mg (about 29 mg per kg per day), azathioprine 2 x 50 mg per day

(about 2 mg per kg daily) and calcium+vit.D. Addtionally we give him

fish oil. We have a history of various autoimmune diseases in both my

and my husband's side and my grandfather had cancer of the rectum.

I am, to say the least, confused and frustrated about the amount of

urso that is being prescribed. Last year until August he was on 8 pills

a day, then on 11 pills a day till Feb, again on 8 pills a day till

this month and now on 12 pills a day. All this time especially his ALP

has fluctuated being about twice the normal upper limit for his age,

nevermind the amount of urso. I am also a bit in doubt if giving 19

pills a day for a normal-looking 11-year old is really necessary, that

is if all those pills are really necessary. And if it is not partly

because of the big amount of medicine that the liver/bile ducts do not

calm down. The UC is unsymptomatic which is good. Are we the only ones

whose doctors keep upping and lowering the urso dose this frequently?

And yes, part of problem is that there are several treating doctors, a

pediatric one and a couple of gastros one of whom is really experienced

but it is him that we see the least).

Sorry to write to you all about this frustration but I was just

wondering if this is what happend to others too. And yes, I know 19

pills a day is not much compared to what we can expect at some point

later on but for now it is a lot to us.

Taru-Mari (today a frustrated mother of Eemeli with psc and uc)

> I'd like to express my specific concern about my son stopping taking

> ursodiol without more information. My son is not only taking ursodiol

> but is also taking rifampin (rifampicin) by prescription from his

> hepatologist.

July 2, 2008