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My protein total

was 742mg/24hr

From what my old doctor implied, this is mild - I went from 8g/24 hr pretransplant to 1g/24 hr 20 years after transplant. (I've been led to believe that if IgAN recurs in the transplanted kidney, it's much milder because you're already on the drugs needed to help control the disorder in the first place.)

Robin s

http://www.themestream.com/authors/73826.html

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I think you are right. I did find a different figure, which is 1.1 mg/dl.

Does that sound right?

-Byron

> Re: Please help

>

>

> Hi Byron. Are you sure the 2.3g/24hr isn't just creatinine in a 24 hour

> sample? Creatinine clearance is different, and is expressed as

> something per

> sec. It should be on that lab report also, probably above or

> underneath that

> figure.

>

> Your proteinuria is mild to moderate, since it's less than 1 gram per day.

>

> Pierre

>

>

> Please help

>

>

> > I was just at my family doctor and got a copy of my recent lab

> tests. My

> > neph hasn't even seen these yet. I want to take a more active role with

> my

> > disease but I need to understand the tests first. I had a creatinine

> > clearance of 2.3g/24hr, and the lab range states 0.8-2.4. My protein

> total

> > was 742mg/24hr. Does anyone know how this rates? Is this mild

> or middle

> of

> > the road? Your comments are greatly appreciated.

> > -Byron

> >

> >

> >

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I found it. It says 123 ml/min. Good? Bad? Start praying?

-Byron

> Re: Please help

>

>

> No, that would be serum creatinine. It should be in the section entitled

> " Urine Chemistry " . It's expressed as mL/min/1.73 m2 or ml/sec/m**2, or

> something like that.

> Pierre

>

> Re: Please help

> > >

> > >

> > > Hi Byron. Are you sure the 2.3g/24hr isn't just creatinine in

> a 24 hour

> > > sample? Creatinine clearance is different, and is expressed as

> > > something per

> > > sec. It should be on that lab report also, probably above or

> > > underneath that

> > > figure.

> > >

> > > Your proteinuria is mild to moderate, since it's less than 1 gram per

> day.

> > >

> > > Pierre

> > >

> > >

>

>

>

>

>

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Thanks for your help.

> Re: Please help

>

>

> Well, normal range in those units is 97 to 137 ml/min, so I wouldn't worry

> about it too much.

> Pierre

>

> RE: Please help

>

>

> > I found it. It says 123 ml/min. Good? Bad? Start praying?

> > -Byron

> >

>

>

>

>

>

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Hi Byron. Are you sure the 2.3g/24hr isn't just creatinine in a 24 hour

sample? Creatinine clearance is different, and is expressed as something per

sec. It should be on that lab report also, probably above or underneath that

figure.

Your proteinuria is mild to moderate, since it's less than 1 gram per day.

Pierre

Please help

> I was just at my family doctor and got a copy of my recent lab

tests. My

> neph hasn't even seen these yet. I want to take a more active role with

my

> disease but I need to understand the tests first. I had a creatinine

> clearance of 2.3g/24hr, and the lab range states 0.8-2.4. My protein

total

> was 742mg/24hr. Does anyone know how this rates? Is this mild or middle

of

> the road? Your comments are greatly appreciated.

> -Byron

>

>

>

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No, that would be serum creatinine. It should be in the section entitled

" Urine Chemistry " . It's expressed as mL/min/1.73 m2 or ml/sec/m**2, or

something like that.

Pierre

Re: Please help

> >

> >

> > Hi Byron. Are you sure the 2.3g/24hr isn't just creatinine in a 24 hour

> > sample? Creatinine clearance is different, and is expressed as

> > something per

> > sec. It should be on that lab report also, probably above or

> > underneath that

> > figure.

> >

> > Your proteinuria is mild to moderate, since it's less than 1 gram per

day.

> >

> > Pierre

> >

> >

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Well, normal range in those units is 97 to 137 ml/min, so I wouldn't worry

about it too much.

Pierre

RE: Please help

> I found it. It says 123 ml/min. Good? Bad? Start praying?

> -Byron

>

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My pleasure. Glad to be able to let you know it doesn't look too bad at

present.

Pierre

RE: Please help

> >

> >

> > > I found it. It says 123 ml/min. Good? Bad? Start praying?

> > > -Byron

> > >

> >

> >

> >

> >

> >

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If this helps my Neph experimented with it when my protein was in the

700-800 mg/24hr range. After 1 month it dropped to somewhere in the 300

range. I'm back up, but my last 24hr was done while I apparently was

comming down with strep throat. I had also stopped the fish oil pills, kind

of my own experiment. My neph admits that we are actually more up to date

on current developments than many of them. Anyway, because my disease

hasn't really progressed in the last 15 yrs or so I have the luxury to play

with new methods. Just remember that cellcept is an immune supressent, and

has side effects. The sensativity to light one is just weird. Here in PA a

one month supply goes for about $360.00, and with my insurance it was

$60.00. He guessed at trying a one month run.

-Byron

> Re: Please help

>

>

> I recall Byron asked about other persons using of Cellcept. Pierre do you

> have data about the severity of the IgaN at which NEPH start and stop

> treatment with such a drug?. Is there an increase use of it, and can this

> give hope to other patients that there are signs of a possible cure?

> Thanks a lot.

>

> Claude

>

>

>

>

>

> Pierre L5/04/01 8:51pierre.lachaine@...

>

> > My pleasure. Glad to be able to let you know it doesn't look too bad at

> > present.

> > Pierre

> >

> > RE: Please help

> >>>

> >>>

> >>>> I found it. It says 123 ml/min. Good? Bad? Start praying?

> >>>> -Byron

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>>

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I wasn't asked to sign a waiver. I can't remember where I read or heard it,

but the concept of using cellcept was that by suppressing the immune system

it allows the kidneys to " recover " from whatever it is that IGAN clogs in

the kidneys. I know, amazing technical description.

Pierre, is this close to your understanding?

> Re: Please help

>

>

> I don't know of any specific levels that serve as a guideline, but, as far

> as I know, in normal clinical practice, this is usually reserved for cases

> that are clearly rapidly-progressive, where, if nothing is done,

> the kidneys

> are going to be lost anyway. Not that it is expected to arrest the disease

> in those cases, but it *may* slow it down and buy some time for

> dialysis or

> transplant. For the past few years, some nephrologists have been getting

> more agressive in trying different things, even though there may

> not be any

> clear research data that they help. Cellcept is one of those

> things. I just

> don't know, because opinion is divided even within the nephrology

> community,

> although clearly, the vast majority of nephrologists do not use

> Cellcept or

> any other immunosuppressants (other than corticosteroids) for

> chronic IgAN.

>

> Here is a good question for those of you who have been on Cellcept. I'm

> curious as the whether you were asked to sign some kind of waiver

> to protect

> the nephrologist against a malpractice lawsuit should things go wrong?

>

> Pierre

>

>

> RE: Please help

> > >>>

> > >>>

> > >>>> I found it. It says 123 ml/min. Good? Bad? Start praying?

> > >>>> -Byron

> > >>>>

> > >>>

> > >>>

> > >>>

> > >>>

> > >>>

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Here is my bit of info. They put me on it because of the recurrence of IGAN

in

my transplant. At the same time they lowered my Sandimmune dosage. They

are

accomplishing two things by doing this.

1) possibly slowing/stopping the progression of the disease

2) providing an immunosuppressive substitute for the current

immunsuppressents I am on.

My situation is obviously different from someone who has not had a

transplant

I did not have to sign any waiver.

Will

Re: Please help

I don't know of any specific levels that serve as a guideline, but, as far

as I know, in normal clinical practice, this is usually reserved for cases

that are clearly rapidly-progressive, where, if nothing is done, the kidneys

are going to be lost anyway. Not that it is expected to arrest the disease

in those cases, but it *may* slow it down and buy some time for dialysis or

transplant. For the past few years, some nephrologists have been getting

more agressive in trying different things, even though there may not be any

clear research data that they help. Cellcept is one of those things. I just

don't know, because opinion is divided even within the nephrology community,

although clearly, the vast majority of nephrologists do not use Cellcept or

any other immunosuppressants (other than corticosteroids) for chronic IgAN.

Here is a good question for those of you who have been on Cellcept. I'm

curious as the whether you were asked to sign some kind of waiver to protect

the nephrologist against a malpractice lawsuit should things go wrong?

Pierre

RE: Please help

> >>>

> >>>

> >>>> I found it. It says 123 ml/min. Good? Bad? Start praying?

> >>>> -Byron

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>>

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I don't know of any specific levels that serve as a guideline, but, as far

as I know, in normal clinical practice, this is usually reserved for cases

that are clearly rapidly-progressive, where, if nothing is done, the kidneys

are going to be lost anyway. Not that it is expected to arrest the disease

in those cases, but it *may* slow it down and buy some time for dialysis or

transplant. For the past few years, some nephrologists have been getting

more agressive in trying different things, even though there may not be any

clear research data that they help. Cellcept is one of those things. I just

don't know, because opinion is divided even within the nephrology community,

although clearly, the vast majority of nephrologists do not use Cellcept or

any other immunosuppressants (other than corticosteroids) for chronic IgAN.

Here is a good question for those of you who have been on Cellcept. I'm

curious as the whether you were asked to sign some kind of waiver to protect

the nephrologist against a malpractice lawsuit should things go wrong?

Pierre

RE: Please help

> >>>

> >>>

> >>>> I found it. It says 123 ml/min. Good? Bad? Start praying?

> >>>> -Byron

> >>>>

> >>>

> >>>

> >>>

> >>>

> >>>

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