Re: Prognostic indicators

[Guest guest]

Thanks. As far as I know, the only time I showed blood in the urine is when one would expect a woman to have blood in the urine - during menstruation. And as we all know, that is not the indicator of a disease state but of a normally working gynecological cycle.

Robin s

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

[Guest guest]

Good question. Let me give you a quote from a recent article published in a

reliable medical journal, rather than my interpretation.

QUOTE

End-stage renal failure reportedly develops in 20 to 30% of patients with

IgAN at 20 yr . These percentages have to be interpreted cautiously, because

patients with mild disease may never come to clinical attention and others

may present with end-stage renal disease and never undergo a renal biopsy.

******

It is clear, however, that specific treatment is applicable only to a

minority of patients. The correct identification of that minority requires a

reliable prognostic scoring system.

******

Most studies identified the following clinical parameters as predictors of a

poor outcome: male gender, young age at onset of disease, absence of

episodes of recurrent macrohematuria, persistent microscopic hematuria,

hypertension, and, as the most powerful predictors, the extent of

proteinuria and renal insufficiency

UNQUOTE

As an example however, I had all the above predictors of poor outcome

(except proteinuria was never dramatically high), with rather severe

hypertension to boot, never had ANY treatment except blood pressure

medications (and that only since the 90's), and I'm in my 24th year with the

disease. Still only progressing towards ESRD, but not there yet. I'm not

saying everyone is the same though.

Pierre

Re: My perspective on IgAN

> In a message dated 4/6/01 10:45:48 AM Central Daylight Time,

> pierre.lachaine@... writes:

>

>

> > I guess that anyone's best hope is to not be among the 15 to 30% who

> > progress to end-stage renal failure!

> >

> >

>

> Does anyone have any idea what risk factors exist to put us in that

15-30%?

> The only one I know of is proteinuria without hematuria - the worse the

> proteinuria, the higher the risk of kidney failure. I happen to have had a

> high-risk profile as measured by this standard. I'm thinking of something

> similar to the association between genetics, high-fat diets, high

cholestrol

> levels and heart disease.

>

> Robin s

>

>

[Guest guest]

Pierre, do you know what happens to the remaining 70-80 percent after

20 years years or so? I know you are in your 24th year. Do some

progress to ESRD later than that, or is that some sort of delta after

which most with IgAN can anticipate not gooing into ESRD?

> Good question. Let me give you a quote from a recent article

published in a

> reliable medical journal, rather than my interpretation.

>

> QUOTE

>

> End-stage renal failure reportedly develops in 20 to 30% of

patients with

> IgAN at 20 yr . These percentages have to be interpreted

cautiously, because

> patients with mild disease may never come to clinical attention and

others

> may present with end-stage renal disease and never undergo a renal

biopsy.

>

> ******

> It is clear, however, that specific treatment is applicable only to

a

> minority of patients. The correct identification of that minority

requires a

> reliable prognostic scoring system.

> ******

>

> Most studies identified the following clinical parameters as

predictors of a

> poor outcome: male gender, young age at onset of disease, absence of

> episodes of recurrent macrohematuria, persistent microscopic

hematuria,

> hypertension, and, as the most powerful predictors, the extent of

> proteinuria and renal insufficiency

>

> UNQUOTE

>

> As an example however, I had all the above predictors of poor

outcome

> (except proteinuria was never dramatically high), with rather severe

> hypertension to boot, never had ANY treatment except blood pressure

> medications (and that only since the 90's), and I'm in my 24th year

with the

> disease. Still only progressing towards ESRD, but not there yet.

I'm not

> saying everyone is the same though.

>

> Pierre

>

> Re: My perspective on IgAN

>

>

> > In a message dated 4/6/01 10:45:48 AM Central Daylight Time,

> > pierre.lachaine@s... writes:

> >

> >

> > > I guess that anyone's best hope is to not be among the 15 to

30% who

> > > progress to end-stage renal failure!

> > >

> > >

> >

> > Does anyone have any idea what risk factors exist to put us in

that

> 15-30%?

> > The only one I know of is proteinuria without hematuria - the

worse the

> > proteinuria, the higher the risk of kidney failure. I happen to

have had a

> > high-risk profile as measured by this standard. I'm thinking of

something

> > similar to the association between genetics, high-fat diets, high

> cholestrol

> > levels and heart disease.

> >

> > Robin s

> >

> >

[Guest guest]

Impossible to predict. I know that's not much of an answer...but that's

about the size of it. Once kidney damage is there, in the form of

glomerulosclerosis, it doesn't go away. The best one can hope for is that

the damage won't progress any further. So, theoretically, a person can go

for many years with stable kidney function, and never deteriorate any

further. However, I think that for most people, it's more a matter of losing

kidney function little by little, and of how fast you lose it. For a few, it

might decide to take a turn for the worse, and that can happen pretty much

anytime. This is the unpredictable part. For others, there is just a steady

progression so slow that they eventually die of something else before the

kidney disease gets them, and for others still, ESRD happens sooner rather

than later. Luckily, we all start out with about 80% more kidney function

than we need. But there isn't a certain number of years after which, if you

haven't reached ESRD yet, you're home free. It's also important to remember

that at present, the oldest diagnosed cases of IgAN can't be known to be

older than 32 years, since glomerulonephritis caused by IgA deposits wasn't

known as a separate entity until the late 60's. That's not a long time, when

you stop to think of it.

Pierre

Re: Prognostic indicators

> Pierre, do you know what happens to the remaining 70-80 percent after

> 20 years years or so? I know you are in your 24th year. Do some

> progress to ESRD later than that, or is that some sort of delta after

> which most with IgAN can anticipate not gooing into ESRD?

[Guest guest]

This is a problem I come across a lot. I keep explaining that I had my last

Depo Provera injection 10 months ago, and that it is not uncommon for women

to have an 18 month period when they come off it, but because nephs don't

know gyne they discount that and assume it is blood from the kidney. (I'd

like to know for sure but it is not possible just yet).

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[Guest guest]

Waaaiiit a minute. I know I didn't check my email all weekend but what is this about Depo? I was on it for four years. And I ended up in the hospital b/c of it. Apparently, there is like a one percent chance you could severe abdominal pain, kind of like a cyst bursting. Needless to say, I was shopping one day and passed out on the side walk in the middle of downtown ton, SC b/c of the pain. And I had to be hospitalized...they thought I had appendicytis. Sooooo, if you guys know something please do tell. Stupid Depo...it would be just my luck if it had some kidney connection. Once again, Ugh.....

Smiles,

andria Blaelock wrote:

This is a problem I come across a lot. I keep explaining that I had my last Depo Provera injection 10 months ago, and that it is not uncommon for women to have an 18 month period when they come off it, but because nephs don't know gyne they discount that and assume it is blood from the kidney. (I'd like to know for sure but it is not possible just yet)._________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

[Guest guest]

, Depo does and does not have connections to kidneys, and no one seems

to know anything more than that. If you have kidney problems you shouldn't

use it, but I don't know exactly why. It can cause insulin resistance which

may lead to diabetes, also water retention and weight gain. My biopsy

showed an irritation of the spaces (if that makes any sense) of the

glomeruli which the neph couldn't understand but which I belive is to do

with the Depo.

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[Guest guest]

,

Oh this is great news about Depo, 4 years after I started it LOL The

gynecologist recommended the Depo shot for me because of my high

blood pressure....he said birth control pills can raise blood

pressure. So I said sure, I'll get the shot, sounds easy. Of

course, he BARELY mentioned the weight gain, and now that I'm a cow

after being skinny my whole life, I've finally decided to stop taking

the shot and get my fallopian tubes " tied " .

My surgery is scheduled for this Thursday the 12th. Not supposed to

be in the hospital but a few hours, then home to recouperate. I

decided on this option because I don't want children, and with the

IgAN and the high blood pressure and kidneys at 54%, I didn't want to

risk the possibility of complications. And I like my dog just fine,

he will never tell me " No! I hate you! " LOL

But I never have read or heard anywhere about Depo not being good for

kidney patients. I wish my gyno would have at least brought that

up. I seem to find that I know more about my disease than the docs

do.

Teri

> , Depo does and does not have connections to kidneys, and no

one seems

> to know anything more than that. If you have kidney problems you

shouldn't

> use it, but I don't know exactly why. It can cause insulin

resistance which

> may lead to diabetes, also water retention and weight gain. My

biopsy

> showed an irritation of the spaces (if that makes any sense) of the

> glomeruli which the neph couldn't understand but which I belive is

to do

> with the Depo.

>

>

______________________________________________________________________

___

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http://www.hotmail.com.

[Guest guest]

I was on Depo too! How many of us ladies out here have

taken it??? Very interesting! Hope that stupid shit,

opps, I mean shot(LOL) did not give me this stupid

disease.

--- teridinosaur@... wrote:

> ,

>

> Oh this is great news about Depo, 4 years after I

> started it LOL The

> gynecologist recommended the Depo shot for me

> because of my high

> blood pressure....he said birth control pills can

> raise blood

> pressure. So I said sure, I'll get the shot, sounds

> easy. Of

> course, he BARELY mentioned the weight gain, and now

> that I'm a cow

> after being skinny my whole life, I've finally

> decided to stop taking

> the shot and get my fallopian tubes " tied " .

>

> My surgery is scheduled for this Thursday the 12th.

> Not supposed to

> be in the hospital but a few hours, then home to

> recouperate. I

> decided on this option because I don't want

> children, and with the

> IgAN and the high blood pressure and kidneys at 54%,

> I didn't want to

> risk the possibility of complications. And I like

> my dog just fine,

> he will never tell me " No! I hate you! " LOL

>

> But I never have read or heard anywhere about Depo

> not being good for

> kidney patients. I wish my gyno would have at least

> brought that

> up. I seem to find that I know more about my

> disease than the docs

> do.

>

> Teri

>

>

> > , Depo does and does not have connections to

> kidneys, and no

> one seems

> > to know anything more than that. If you have

> kidney problems you

> shouldn't

> > use it, but I don't know exactly why. It can

> cause insulin

> resistance which

> > may lead to diabetes, also water retention and

> weight gain. My

> biopsy

> > showed an irritation of the spaces (if that makes

> any sense) of the

> > glomeruli which the neph couldn't understand but

> which I belive is

> to do

> > with the Depo.

> >

> >

>

______________________________________________________________________

> ___

> > Get Your Private, Free E-mail from MSN Hotmail at

> http://www.hotmail.com.

>

>

__________________________________________________

[Guest guest]

I don't think that many people really know the down sides, and I don't think

that many people really read the small print before they take these things

(I know I didn't then but do now). Having said that I didn't know I had a

kidney condition then. As soon as I get time (and my cycle settles down) I

am going to look into the Billings method. Then I will look at getting

myself another rottweiler!

From: teridinosaur@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: Prognostic indicators

Date: Mon, 09 Apr 2001 17:23:05 -0000

,

Oh this is great news about Depo, 4 years after I started it LOL The

gynecologist recommended the Depo shot for me because of my high

blood pressure....he said birth control pills can raise blood

pressure. So I said sure, I'll get the shot, sounds easy. Of

course, he BARELY mentioned the weight gain, and now that I'm a cow

after being skinny my whole life, I've finally decided to stop taking

the shot and get my fallopian tubes " tied " .

My surgery is scheduled for this Thursday the 12th. Not supposed to

be in the hospital but a few hours, then home to recouperate. I

decided on this option because I don't want children, and with the

IgAN and the high blood pressure and kidneys at 54%, I didn't want to

risk the possibility of complications. And I like my dog just fine,

he will never tell me " No! I hate you! " LOL

But I never have read or heard anywhere about Depo not being good for

kidney patients. I wish my gyno would have at least brought that

up. I seem to find that I know more about my disease than the docs

do.

Teri

> , Depo does and does not have connections to kidneys, and no

one seems

> to know anything more than that. If you have kidney problems you

shouldn't

> use it, but I don't know exactly why. It can cause insulin

resistance which

> may lead to diabetes, also water retention and weight gain. My

biopsy

> showed an irritation of the spaces (if that makes any sense) of the

> glomeruli which the neph couldn't understand but which I belive is

to do

> with the Depo.

>

>

______________________________________________________________________

___

> Get Your Private, Free E-mail from MSN Hotmail at

http://www.hotmail.com.

_________________________________________________________________________

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