Fw: Re: Your Yahoo PSC posts

[Guest guest]

Hi ,Thanks for the additional, important information that you wrote to me. It is great that you got not a hepatologist only, but a PSC researcher, too. And that is very interesting that he has been skeptical about Urso. And so it is for your own benefit that he did not prescribe you the high dose. Mayo, doctor Lindor use to have very high hopes in Urso, high dose. But i have no idea why they still went on with the study, although they were all the way not finding that it was working. Two years ago i was told that they will be stopping [at 5yrs], but then they decided to continue another two years and now it is suddenly, stopped.I am not aware how your functions were with Urso. I did have my 3mo LFT, Yesterday, the first time without the drug, and although i did expect my enzymes to go up as before the study, i did not like it. My ALK is about 4times the std., now and double the amount in last May. And both the ALT/AST

are about triple and>double the std values. They both were about normal or below during the last 3or 4 years. I have argued many times with my doctors, in the past that Urso was masking my real condition when they keep telling me, that i am fine, inspite of cholangitis and the sometime, very intense URQ pain. What i want to say is that at least the drug was somehow helping with the drainage and inflammation. But it should have been like yourself, a lower dose. My GI is wanting to put me on a low dose, but after the one year, observation. I have not decided, yet.Regarding the Urso group versus placebo, i did learn only lately, that a good number of patients were actually at stage 4 of PSC and so unfortunately, the high dose actually speeded their transplant time and also caused varices to occur. But as you have mentioned, we will have to wait for the study results to be finalized and published, first.About donating blood to the

gene bank, i am so willing to do that. But i would have to check with Mayo first. I don't believe i could have participated, earlier. But i will find out and if so, i will then contact the coordinator. Thanks for mentioning it and for the other info. Take care.

> > Subject: Re: Your Yahoo PSC posts> To: frd_sr_dado@...> Date: Wednesday, September 17, 2008, 11:36 PM> Hi ,> > Thanks for all the info. I read the posts. The Yahoo> group is a > valuable source of information as well as support.> > My hepatologist is also a PSC researcher. He explained> that studies > have to end when an impartial safety committee decides that> they may be > harming the patients. They have to notify the patients to> stop the drug > immediately under patient safety rules. However, it is> customary for > the study group to keep the study results confidential> until the study > is peer reviewed and published. That probably explains why>

they have > not notified any doctors or publicized the end of the> study.> > My doctor, Bowlus at UC , has always been> skeptical about > Urso. He will prescribe it if a patient asks for it but he> does not > recommend it. I've been taking low to medium dose Urso> for years. I do > not tolerate high dose because it causes very dry skin and> itching. > After the Mayo study stopped, I decided to stop taking it.> > I am interested to see whether the patients taking Urso> were sicker to > begin with than the placebo takers.> > Thanks for your encouragement. We picked Saturday at our> first meeting > two years ago but I am hoping Sunday meetings will have> better attendance.> > If you are willing to donate a small amount of blood for> Dr. Bowlus' > gene bank/psc patient

registry, Please contact his patient> coordinator > Marilyn at:> > Phone: > FAX: > email: marilyn.robinson@...> > > Best Wishes, > > > > >

> >> >

[Guest guest]

,

As a fellow study participant I found your post very interesting. I

have also seen marked rise in my LFT's since ceasing the medication

(now confirmed that I was on the real thing) but this was expected

since I saw a significant decrease when the study began.

I began the study 5 years ago with low expectations since everything

I had read described the lowering of LFT's while on Urso but no

corresponding benefit in overall disease course. I have seen my

ALT/AST/AlkPhos/Bili all double since stopping the medication.

I started the study at late stage three or early stage four and now

am probably a solid stage four. I can however say I have seen not

seen any negative effects such as varices or rapid progression to

transplant. Except the occasional cholangitis episode and ERCP I

have been relatively problem free. I also shared the concern that

the medication was simply masking my disease progression.

My main concern at this time in stopping the Urso is not for benefits

with the liver but rather the more documented benefit of cancer

prevention in the colon. I had a little scare with a small biopsy

showing low grade dysplasia last year and seriously considered

colectomy. This was a tough choice for me because my Ulcerative

Colitis is very much under control and gives me no trouble.

Ultimately it was decided to monitor closely and so far no additional

problems have surfaced.

By the way, I participated in Dr. Bowlus's study as well while also

participating in the Mayo study. The only thing they do is draw

blood so it really does not affect participation in either study.

I know this is a stressful time for us as we begin to adjust to not

participating in the study. It is so weird for me to take such a

smaller amount of pills after five years. Dealing with these higher

LFT tests and symptoms that seem to be creeping in is stressful as

well. I am also adjusting to being just another patient again and

not having the higher level of access I had with my study coordinator

during all those years. Hang in there, I am sure answers will come,

in fact I am meeting with my doctor in two weeks to discuss the end

of the study (he is meeting with all his patients) so maybe more

information will be available then. I will keep you posted if I

learn anything new.

in Seattle

>

>>

> Hi ,

>

> Thanks for the additional, important information that you wrote to

me. It is great that you got not a hepatologist only, but a PSC

researcher, too. And that is very interesting that he has been

skeptical about Urso. And so it is for your own benefit that he did

not prescribe you the high dose. Mayo, doctor Lindor use to have very

high hopes in Urso, high dose. But i have no idea why they still went

on with the study, although they were all the way not finding that it

was working. Two years ago i was told that they will be stopping  [at

5yrs], but then they decided to continue another two years and now it

is suddenly, stopped.

>

> I am not aware how your functions were with Urso. I did have my 3mo

LFT, Yesterday, the first time without the drug, and although i did

expect my enzymes to go up as before the study, i did not like it. My

ALK is about 4times the std., now and double the amount in last May.

And both the ALT/AST are about triple and>double the std values. They

both were about normal or below during the last 3or 4 years. I have

argued many times with my doctors, in the past that Urso was masking

my real condition when they keep telling me, that i am fine, inspite

of cholangitis and the sometime, very intense URQ pain. What i want

to say is that at least the drug was somehow helping with the

drainage and inflammation. But it should have been like yourself, a

lower dose. My GI is wanting to put me on a low dose, but after the

one year, observation. I have not decided, yet.

>

> Regarding the Urso group versus placebo, i did learn only lately,

that a good number of patients were actually at stage 4 of PSC and so

unfortunately, the high dose actually speeded their transplant time

and also caused varices to occur. But as you have mentioned, we will

have to wait for the study results to be finalized and published,

first.

>

> About donating blood to the gene bank, i am so willing to do that.

But i would have to check with Mayo first. I don't believe i could

have participated, earlier. But i will find out and if so, i will

then contact the coordinator. Thanks for mentioning it and for the

other info. Take care.

>  

>

>

>