cepstat trials for IgA N

[Guest guest]

I was recently diagnosed with IgA. I saw a specialist who would like

me to participate in a 1 yesr trial with cepstat ( a drug used by

transplant patients. )

Has anyone in this group heard of these kinds of trials

( especially cepstat related trials )?

Thanks,

luke07960

[Guest guest]

I heard a news report on this drug that said they had great results but I

have no first had knowledge.

God Bless,

K.

cepstat trials for IgA N

> I was recently diagnosed with IgA. I saw a specialist who would like

> me to participate in a 1 yesr trial with cepstat ( a drug used by

> transplant patients. )

>

> Has anyone in this group heard of these kinds of trials

> ( especially cepstat related trials )?

>

> Thanks,

> luke07960

>

>

>

>

[Guest guest]

Hi, Luke.

When I was first diagnosed in June 2001, my nephrologist referred me

to a specialist involved in a study of IgAN and cellcept, an anti-

rejection drug used for transplant patients. This study was at

Columbia Prebyterian Hospital in NY.

I looked into the study, grilled the doctors as to possible

benefits/dangers, and in the end opted not to participate for

personal reasons (I am getting married and moving outside the US and

I would like to eventually get pregnant and this medicine would be

unsafe for an unborn child).

My advice is to do as much research as you can into the study and the

medication and weigh the pros and cons. An additional factor might

be at what stage you are in regard to kidney function.

Not too informational, but I hope this helps a bit.

> I was recently diagnosed with IgA. I saw a specialist who would

like

> me to participate in a 1 yesr trial with cepstat ( a drug used by

> transplant patients. )

>

> Has anyone in this group heard of these kinds of trials

> ( especially cepstat related trials )?

>

> Thanks,

> luke07960

[Guest guest]

Hi ,

Thanks for the info. This is the same study ( Columbia )that I was

referring to. I may have incorrectly named the medication ( I called

in Cepstat, you called it cellcept ...you're probably right ). I

have not done the research yet but plan on doing so once I get

more info on the trial ( should be this week ). I was told that the

medication is commonly used with no side effects. Looking for

testimonial from anyone who has actually used it.

I'm in the early stages. Diagnosed in October 2001, age 38,

creatinine level of 1.4 - 1.6, protein levels of barely over 1g / 24

hrs. Was told that I am the ideal candidate based on all of this ...

we'll see.

Luke

> > I was recently diagnosed with IgA. I saw a specialist who would

> like

> > me to participate in a 1 yesr trial with cepstat ( a drug used by

> > transplant patients. )

> >

> > Has anyone in this group heard of these kinds of trials

> > ( especially cepstat related trials )?

> >

> > Thanks,

> > luke07960

[Guest guest]

People with rapidly-progressive IgAN are more likely to have tried Cellcept.

I'm sure there are a few members of the group who have.

Pierre

Re: cepstat trials for IgA N

> Hi ,

>

> Thanks for the info. This is the same study ( Columbia )that I was

> referring to. I may have incorrectly named the medication ( I called

> in Cepstat, you called it cellcept ...you're probably right ). I

> have not done the research yet but plan on doing so once I get

> more info on the trial ( should be this week ). I was told that the

> medication is commonly used with no side effects. Looking for

> testimonial from anyone who has actually used it.

>

> I'm in the early stages. Diagnosed in October 2001, age 38,

> creatinine level of 1.4 - 1.6, protein levels of barely over 1g / 24

> hrs. Was told that I am the ideal candidate based on all of this ...

> we'll see.

>

> Luke

>

>

> > > I was recently diagnosed with IgA. I saw a specialist who would

> > like

> > > me to participate in a 1 yesr trial with cepstat ( a drug used by

> > > transplant patients. )

> > >

> > > Has anyone in this group heard of these kinds of trials

> > > ( especially cepstat related trials )?

> > >

> > > Thanks,

> > > luke07960

>

>

>

[Guest guest]

Hi, Luke.

Most of the people that I was able to talk with (via email on a board

with transplant patients) said that they tolerated cellcept well. Of

course, they tend to take many medications.

Look up cellcept in a search engine and you should be able to find

the drug company's published medical insert information. One concern

is that it does compromise the body's immune system and its ability

to fight infections. There also seemed to be a risk for people prone

to melanoma or lymphoma.

To be truthful, the study director that I spoke wth kind of made me

feel like a piece of meat in their eyes (a kidney, to be exact).

Probably true. I was also the " ideal candidate " (33 yrs old;

creatinine 1.1-1.5; protein at 3-4g). Is that supposed to make me

feel better? Like I've wond the lottery or something?

I thought (and prayed) about it for a couple of months before

deciding. In the end, my decisions were personal as I mentioned.

On the plus side, Dr. Appel is supposed to be one of the best IgA men

around and it would not hurt to have him follow your case closely.

I also had a doctor, a good friend, look over the paperwork and he

said it looked like a good study. And my nephrologist does think

that cellcept will eventually show some merit.

In the end, I am really peaceful about opting out. But I do hope

that some people are in the position to participate. If you do, we

will all be very interested in your experiences.

Take care,

> > > I was recently diagnosed with IgA. I saw a specialist who

would

> > like

> > > me to participate in a 1 yesr trial with cepstat ( a drug used

by

> > > transplant patients. )

> > >

> > > Has anyone in this group heard of these kinds of trials

> > > ( especially cepstat related trials )?

> > >

> > > Thanks,

> > > luke07960