Today's six month checkup - stopping Urso

[Guest guest]

I had my 6 month checkup and bloodwork today. I was

told to stop taking Urso. My hepatologist personally spoke with Dr.

Lindor on the study. I admit to some trepidation. After 7 years

without symptoms, I'm not wild about changing things.

I'll wait for the bloodwork results and then stop the Urso. I'm to get

another LFT in a month and see if anything's changed. Apparently, they

will prescribe Urso if pruritus starts immediately after terminating it

(oh joy).

I asked if the adverse results noted in the study were due to PSC being

too advanced. He has the same question. According to him, they know

that those in early stages of Primary Biliary Cirrhosis (not PSC) will

respond to Urso, but those in advanced PBC will not. Sure seems like

the same should be true of PSC.

He also had talked to the Axcan Pharma rep, as it appears another study

is needed (they apparently helped fund the Mayo study).

I did hear that the hepatologist and his staff were really impressed

with the speakers the foundation is able to arrange for the

conferences. They might actually attend the Chicago conference. He

was also impressed with the speed of communication about the study

termination. I don't think they would have heard for weeks. He had to

call Dr. Lindor directly to confirm, of course.

I'm very grateful to be a member of this group. Knowledge is power,

and you folks are doing a great job of keeping each other informed.

Thanks, and thanks to the Partners too!

Arne

[Guest guest]

Arne, were you on a high dose? I thought I remembered you NOT being on

high dose. I am confused because the study relates to high dose and

you were told to stop. Why not simply lower your dose?

ee

[Guest guest]

Yes, I am (on a high dose) - 2100 mg/180 lbs (~25 mg/kg). The reason for not

going to a low dose is that the studies (on low dose) showed no benefit.

Arne

---- " ryan.shawnee " shawnee.ryan@...> wrote:

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

Arne, were you on a high dose?... Why not simply lower your dose?

[Guest guest]

Yes, I am (on a high dose) - 2100 mg/180 lbs (~25 mg/kg). The reason for not

going to a low dose is that the studies (on low dose) showed no benefit.

Arne

---- " ryan.shawnee " shawnee.ryan@...> wrote:

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

Arne, were you on a high dose?... Why not simply lower your dose?

[Guest guest]

-----Original

Message-----

am shocked by how the

cancer protective effect of urso has been dismissed. I

think they have " thrown the baby out with the bath water " .

I’m (probably the only one) really

enjoying this high dose discussion!

Putting our collective minds together looking for answers makes me feel like

we’re doing *something/anything*

to try and help solve the mysteries of PSC.

Back to the discussion…… , I agree with you on waiting for the study,

but…..the article did pull direct quotes from Dr Lindor.

" We know that this higher dose shouldn't be used, based

on this study, " Dr. Lindor said. " The intermediate doses have not, in other

studies, showed a survival benefit.”

" Three studies have looked at ability of

ursodeoxycholic acid to reduce colonic dysplasia, " " There are some that think the drug may have

a place in reducing that risk of cancer. The data supporting that are from retrospective

studies, and, in my mind, aren't strong enough to lead us to recommend use on a

routine basis for that indication. "

So,

Dr Lindor himself is saying, don’t use high or even intermediate doses and

he (Dr Lindor) isn’t even recommending it for colon cancer.

Barb in Texas - Together in the Fight - Whatever it

Takes!

Son Ken (34) UC 91 PSC 99, LTX 6/21 & 6/30 2007

@ Baylor/Dallas

[Guest guest]

Can anyone tell me what is "HIGH DOSE" for the urisidol? The study language is confusing:

The patients received UDCA 28 to 30 mg/kg/day in 250- or 500-mg Urso Forte (Axcan) or matching placebo.

It sounds like anywhere from 28 - 500 mg which doesn't make sense to me. Is 60 mg a day high dose?

If someone could clarify this, I would appreciate it very much.

Subject: Re: Today's six month checkup - stopping UrsoTo: Date: Thursday, November 13, 2008, 4:49 PM

Lately I've been taking 600mg/day down from 900. As I mentioned earlier, I been on it for a long time and always wondered what good it was.

Of course I'm Post TX.

Don

Please be a blood/organ donor

[Guest guest]

Can anyone tell me what is "HIGH DOSE" for the urisidol? The study language is confusing:

The patients received UDCA 28 to 30 mg/kg/day in 250- or 500-mg Urso Forte (Axcan) or matching placebo.

It sounds like anywhere from 28 - 500 mg which doesn't make sense to me. Is 60 mg a day high dose?

If someone could clarify this, I would appreciate it very much.

Subject: Re: Today's six month checkup - stopping UrsoTo: Date: Thursday, November 13, 2008, 4:49 PM

Lately I've been taking 600mg/day down from 900. As I mentioned earlier, I been on it for a long time and always wondered what good it was.

Of course I'm Post TX.

Don

Please be a blood/organ donor

[Guest guest]

Can anyone tell me what is "HIGH DOSE" for the urisidol? The study language is confusing:

The patients received UDCA 28 to 30 mg/kg/day in 250- or 500-mg Urso Forte (Axcan) or matching placebo.

It sounds like anywhere from 28 - 500 mg which doesn't make sense to me. Is 60 mg a day high dose?

If someone could clarify this, I would appreciate it very much.

Subject: Re: Today's six month checkup - stopping UrsoTo: Date: Thursday, November 13, 2008, 4:49 PM

Lately I've been taking 600mg/day down from 900. As I mentioned earlier, I been on it for a long time and always wondered what good it was.

Of course I'm Post TX.

Don

Please be a blood/organ donor

[Guest guest]

A high dose is 28-30 mg per kg of body weight. So if your body

weight was 100 kg you would take between 2800-3000 mg of Urso per

day. These doses were divided into 250 mg or 500 mg tablets. So if

you took six 500 mg tablets, that would equal 3000 mg per day.

in Seattle

>

> Can anyone tell me what is " HIGH DOSE " for the urisidol?  The study

language is confusing:

>  

> The patients received UDCA 28 to 30 mg/kg/day in 250- or 500-mg

Urso Forte (Axcan) or matching placebo.

>  

> It sounds like anywhere from 28 - 500 mg which doesn't make sense

to me.  Is 60 mg a day high dose?

>  

> If someone could clarify this, I would appreciate it very much.

>

>

[Guest guest]

A high dose is 28-30 mg per kg of body weight. So if your body

weight was 100 kg you would take between 2800-3000 mg of Urso per

day. These doses were divided into 250 mg or 500 mg tablets. So if

you took six 500 mg tablets, that would equal 3000 mg per day.

in Seattle

>

> Can anyone tell me what is " HIGH DOSE " for the urisidol?  The study

language is confusing:

>  

> The patients received UDCA 28 to 30 mg/kg/day in 250- or 500-mg

Urso Forte (Axcan) or matching placebo.

>  

> It sounds like anywhere from 28 - 500 mg which doesn't make sense

to me.  Is 60 mg a day high dose?

>  

> If someone could clarify this, I would appreciate it very much.

>

>

[Guest guest]

Hi Arne &

I just met with my hepatologist on Tuesday of this week and I asked

her about whether she felt I should reduce or d/c my URSO. She said at

this point absolutely not. She echoed 's sentiments that this has

only been reported at a conference and that she'd like to see the

paper before she starts making clinical decisions.

In any event, she also used my liver function tests to guide her

decision. Before URSO, my LFTs were in the stratosphere. Now that I've

been on it for awhile, all but my GGT are out of range and the latter

is only marginally elevated. If my LFTs hadn't responded, she said she

would've reconsidered but in this instance, they had so she'd keep

things as is until she has more(better) information.

Finally, while she assumed the study by Dr. Lindor would have followed

proper controls, she did say that because she didn't know what stage

of PSC the subjects were, that could have profound impact on how they

responded to the URSO--be it good or bad.

On another note, because I'd mentioned some other concerns about the

possibility my colitis was becoming more advanced, she booked a

colonoscopy for me as an early Christmas present. Oh joy ...

[Guest guest]

Hi Arne &

I just met with my hepatologist on Tuesday of this week and I asked

her about whether she felt I should reduce or d/c my URSO. She said at

this point absolutely not. She echoed 's sentiments that this has

only been reported at a conference and that she'd like to see the

paper before she starts making clinical decisions.

In any event, she also used my liver function tests to guide her

decision. Before URSO, my LFTs were in the stratosphere. Now that I've

been on it for awhile, all but my GGT are out of range and the latter

is only marginally elevated. If my LFTs hadn't responded, she said she

would've reconsidered but in this instance, they had so she'd keep

things as is until she has more(better) information.

Finally, while she assumed the study by Dr. Lindor would have followed

proper controls, she did say that because she didn't know what stage

of PSC the subjects were, that could have profound impact on how they

responded to the URSO--be it good or bad.

On another note, because I'd mentioned some other concerns about the

possibility my colitis was becoming more advanced, she booked a

colonoscopy for me as an early Christmas present. Oh joy ...

[Guest guest]

,

I'm not sure I'm reading this right (not that I am doubting it, just uncertain of what is been said), Are you saying your LFTs are still very high, only much lower than they were before you started taking URSO? except for GGT which is now only slightly elevated?

Ian {much slower in brain function than I used to be)

Hi Arne & I just met with my hepatologist on Tuesday of this week and I askedher about whether she felt I should reduce or d/c my URSO. She said atthis point absolutely not. She echoed 's sentiments that this has

only been reported at a conference and that she'd like to see thepaper before she starts making clinical decisions. In any event, she also used my liver function tests to guide herdecision. Before URSO, my LFTs were in the stratosphere. Now that I've

been on it for awhile, all but my GGT are out of range and the latteris only marginally elevated. If my LFTs hadn't responded, she said shewould've reconsidered but in this instance, they had so she'd keep

things as is until she has more(better) information.Finally, while she assumed the study by Dr. Lindor would have followedproper controls, she did say that because she didn't know what stageof PSC the subjects were, that could have profound impact on how they

responded to the URSO--be it good or bad.On another note, because I'd mentioned some other concerns about thepossibility my colitis was becoming more advanced, she booked acolonoscopy for me as an early Christmas present. Oh joy ...

-- Ian Cribb P.Eng.

[Guest guest]

Hi Ian

,

I'm not sure I'm reading this right (not that I am doubting it, just

uncertain of what is been said), Are you saying your LFTs are still

very high, only much lower than they were before you started taking

URSO? except for GGT which is now only slightly elevated?

Ian {much slower in brain function than I used to be)

Nope. All my LFTs are normal except for GGT which is only slightly

elevated. Everything was in the stratosphere before taking Urso.

[Guest guest]

,

That's great to hear. Some of us (myself included) have responded well to URSO. The reason I asked was in your first message you stated " Now that I've been on it for awhile, all but my GGT are out of range " . Out of range means not normal to me.

Ian (52) PSC 89

Hi Ian,I'm not sure I'm reading this right (not that I am doubting it, justuncertain of what is been said), Are you saying your LFTs are stillvery high, only much lower than they were before you started taking

URSO? except for GGT which is now only slightly elevated?Ian {much slower in brain function than I used to be)Nope. All my LFTs are normal except for GGT which is only slightlyelevated. Everything was in the stratosphere before taking Urso.

-- Ian Cribb P.Eng.

[Guest guest]

Hi Ian

> ,

>

> That's great to hear. Some of us (myself included) have responded

well to URSO. The reason I asked was in your first message you stated

" Now that I've been on it for awhile, all but my GGT are out of

range " . Out of range means not normal to me.

>

> Ian (52) PSC 89

>

Ok ... that would be an oops on my part then .... Sometimes I

reread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it.

[Guest guest]

Hi Ian

> ,

>

> That's great to hear. Some of us (myself included) have responded

well to URSO. The reason I asked was in your first message you stated

" Now that I've been on it for awhile, all but my GGT are out of

range " . Out of range means not normal to me.

>

> Ian (52) PSC 89

>

Ok ... that would be an oops on my part then .... Sometimes I

reread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it.

[Guest guest]

Hi Ian

> ,

>

> That's great to hear. Some of us (myself included) have responded

well to URSO. The reason I asked was in your first message you stated

" Now that I've been on it for awhile, all but my GGT are out of

range " . Out of range means not normal to me.

>

> Ian (52) PSC 89

>

Ok ... that would be an oops on my part then .... Sometimes I

reread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it.

[Guest guest]

I do that alot, but I expect people to read what I meant not what I wrote.

Hi Ian> ,> > That's great to hear. Some of us (myself included) have respondedwell to URSO. The reason I asked was in your first message you stated " Now that I've been on it for awhile, all but my GGT are out of

range " . Out of range means not normal to me.> > Ian (52) PSC 89> Ok ... that would be an oops on my part then .... Sometimes Ireread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it. -- Ian Cribb P.Eng.

[Guest guest]

I do that alot, but I expect people to read what I meant not what I wrote.

Hi Ian> ,> > That's great to hear. Some of us (myself included) have respondedwell to URSO. The reason I asked was in your first message you stated " Now that I've been on it for awhile, all but my GGT are out of

range " . Out of range means not normal to me.> > Ian (52) PSC 89> Ok ... that would be an oops on my part then .... Sometimes Ireread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it. -- Ian Cribb P.Eng.

[Guest guest]

I do that alot, but I expect people to read what I meant not what I wrote.

Hi Ian> ,> > That's great to hear. Some of us (myself included) have respondedwell to URSO. The reason I asked was in your first message you stated " Now that I've been on it for awhile, all but my GGT are out of

range " . Out of range means not normal to me.> > Ian (52) PSC 89> Ok ... that would be an oops on my part then .... Sometimes Ireread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it. -- Ian Cribb P.Eng.

[Guest guest]

My computer has the same problem. It does

what I tell it to do, not what I meant to do.….

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Ian Cribb

Sent: Wednesday, November 19, 2008

03:12

To:

Subject: Re: Re:

Today's six month checkup - stopping Urso

I do that alot, but I expect people to read what I

meant not what I wrote.

On 11/18/08,

<peterf8 (AT) yahoo (DOT) com> wrote:

Hi Ian

> ,

>

> That's great to hear. Some of us (myself included) have

responded

well to URSO. The reason I asked was in your first message you

stated

" Now that I've been on it for awhile, all but my GGT are out

of

range " . Out of range means not normal to me.

>

> Ian (52) PSC 89

>

Ok ... that would be an oops on my part then .... Sometimes I

reread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it.

--

Ian Cribb P.Eng.

[Guest guest]

My computer has the same problem. It does

what I tell it to do, not what I meant to do.….

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Ian Cribb

Sent: Wednesday, November 19, 2008

03:12

To:

Subject: Re: Re:

Today's six month checkup - stopping Urso

I do that alot, but I expect people to read what I

meant not what I wrote.

On 11/18/08,

<peterf8 (AT) yahoo (DOT) com> wrote:

Hi Ian

> ,

>

> That's great to hear. Some of us (myself included) have

responded

well to URSO. The reason I asked was in your first message you

stated

" Now that I've been on it for awhile, all but my GGT are out

of

range " . Out of range means not normal to me.

>

> Ian (52) PSC 89

>

Ok ... that would be an oops on my part then .... Sometimes I

reread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it.

--

Ian Cribb P.Eng.

[Guest guest]

My computer has the same problem. It does

what I tell it to do, not what I meant to do.….

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of Ian Cribb

Sent: Wednesday, November 19, 2008

03:12

To:

Subject: Re: Re:

Today's six month checkup - stopping Urso

I do that alot, but I expect people to read what I

meant not what I wrote.

On 11/18/08,

<peterf8 (AT) yahoo (DOT) com> wrote:

Hi Ian

> ,

>

> That's great to hear. Some of us (myself included) have

responded

well to URSO. The reason I asked was in your first message you

stated

" Now that I've been on it for awhile, all but my GGT are out

of

range " . Out of range means not normal to me.

>

> Ian (52) PSC 89

>

Ok ... that would be an oops on my part then .... Sometimes I

reread something and in my mind it reads perfectly okay but in spite

of my best efforts, I must have misread it.

--

Ian Cribb P.Eng.