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Re: Question about IGA- and another question...

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Deb I hear you! I had perfectly normal labs in November '02 and a

full physical that showed me healthy (but overweight) by July of '03

I was at 35% kidney function. In March '03 my entire family was

laid up with a nasty bout of food poisioning from a local

resturant....I just never felt like I recovered from it. Really

makes you wonder about a single event trigger for the rapid form.

Had I not had a snius infection in July I could have easily gone

into full failure without realizing what was happening. In

hindsight I can see the 'signs' cold extremeties, tired all the

time, seriously foamy urine, etc. But in the midst of it I had no

clue my b/p was so high or that my kidneys were failing so quickly.

Thankfully they caught mine with some function left and the

aggessive prednisone treatment I've been on for the past 16 months

along with quite a few antibiotic treatments for random weird

infections have done something to slow things down it seems...my

labs have stayed stable since starting pred anyhow. I really feel

that my constant state of infections had something to do with the

food poisioning bacteria, my white count was constantly elevated for

close to a year until the doctors put me on a full 8 weeks on

antibiotics. So far my white count has been normal and my other

labs stable.

I just finally saw the message about getting a transplant!

Congratulations and I will add my good energy to everyone elses, I

wish him an easy surgery and speedy recovery.

Amy G.

>

> >Can you explain the rapid onset aggessive form this way too? I'm

> >still trying to understand how the aggessive form of IgAN

works...I

> >understand the genetic predisposition to it but if a single event

> >doesn't trigger the rapid form, where does it come from?

> >

> >Amy G.

> >

> >

> >

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Yes, that seems like a reasonable statement to me.

Pierre

Re: Question about IGA- and another question...

>

>

> Pierre,

>

> The Neph from Hopkins said that even with a benign case of Acute Glom.

> (the non-IGA, kind caused by staph) Protein can be in the urine for 6

> months before clearing.

>

> Do you believe this one?

>

> Phil

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

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Yes, that seems like a reasonable statement to me.

Pierre

Re: Question about IGA- and another question...

>

>

> Pierre,

>

> The Neph from Hopkins said that even with a benign case of Acute Glom.

> (the non-IGA, kind caused by staph) Protein can be in the urine for 6

> months before clearing.

>

> Do you believe this one?

>

> Phil

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

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I wouldn't attach too much meaning to simple dipstick tests for blood and

protein in the urine. They are just very rough tests (and often falsely

positive), not a true urinalysis.

Pierre

Re: Question about IGA- and another question...

Elaine,

Good question. My son had a urine test today. No blood but 1+ protein.

Yesterdays' mid-day urine was normal.

What does this mean?

Phil

> > Phil, this is the best I can do...

> >

> > There is something called post-strep glomerulonephritis. In this

> case, the

> > strep infection is definitely the cause of the nephritis, but this

> kind of

> > nephritis usually is not permanent. It does NOT turn into IgAN.

> Some people

> > may already have a mild, undetected IgAN which does become

> diagnosed by

> > coincidence after a strep infection.

> >

> > What happens with IgAN is not really understood by even the best

> > nephrologists and the most expert researchers in the field, but

> with the

> > knowledge we have about it at present, it seems like the problem

> is not with

> > having IgA immune complexes circulating in our blood (which

> everyone in the

> > world has), but rather a problem with their structure. To put it

> simply,

> > they end up binding with something in the kidneys where they

> shouldn't. The

> > defect appears at this time to be with the IgA immune complexes

> themselves,

> > rather than a defect in the kidneys themselves. Many experts think

> that IgAN

> > is simply the same thing as HSP (Henoch-Schönlein purpura), but

> with only

> > the one symptom in the kidneys. Nobody knows what causes HSP

> either. All we

> > know is that HSP appears to be triggered by bacterial or viral

> infections,

> > medicines, insect bites, vaccinations or exposure to chemicals or

> cold

> > weather. Is is the same with just IgAN without the other HSP

> symptoms? This

> > is unknown.

> >

> > Now, is there a precipitating event that causes triggers the IgA

> complexes

> > to become defective? Is it something that people who eventually

> develop IgAN

> > had all along since they were born, something they were genetically

> > pre-disposed to get whenever the right trgger came along? Or is

> there

> > something we are doing or being exposed to in life that causes

> this defect

> > to occur? Nobody can answer that. We, ie. medical science, simply

> do not

> > know.

> >

> > When people say they got an upper respiratory infection of some

> kind and had

> > visible blood in their urine, and then were diagnosed with IgAN,

> it could be

> > that the upper respiratory infection only caused the little flare-

> up of

> > hematuria (blood in urine), because the IgAN was already there,

> too mild to

> > be detected.

> >

> > Others may do so, but I can guarantee that I would never, ever

> suggest IgAN

> > starts with a single event. What I think happens is that for most

> people, a

> > single event just happens to cause the existing underlying

> condition to

> > generate hematuria, which gets the attention of the person or

> parent, and

> > then the doctor for what would have otherwise not have been

> noticed until

> > there was more renal failure. But of course, I have no proof of

> that. It's

> > only what I think.

> >

> > I think this because other people with IgAN never get the visible

> blood in

> > the urine. Like me, they just happen to have a routine medical

> examination

> > and they are found to have microscopic blood in the urine. Further

> > investigation eventually leads to diagnosis of IgAN.

> >

> > Some people are probably more prone than others to have the

> underlying IgAN

> > flare up into a more significant inflammation, which causes the

> hematuria

> > (usually harmless on its own), and/or proteinuria. Everyone with

> IgAN has

> > proteinuria, but for the majority, it just stays at a mild to

> moderate

> > level. For others, it flares up into a heavier proteinuria which

> must be

> > treated. Why? We don't know. There are a lot of things that aren't

> known

> > about all glomerular kidney diseases.

> >

> > Pierre

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

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Share on other sites

I wouldn't attach too much meaning to simple dipstick tests for blood and

protein in the urine. They are just very rough tests (and often falsely

positive), not a true urinalysis.

Pierre

Re: Question about IGA- and another question...

Elaine,

Good question. My son had a urine test today. No blood but 1+ protein.

Yesterdays' mid-day urine was normal.

What does this mean?

Phil

> > Phil, this is the best I can do...

> >

> > There is something called post-strep glomerulonephritis. In this

> case, the

> > strep infection is definitely the cause of the nephritis, but this

> kind of

> > nephritis usually is not permanent. It does NOT turn into IgAN.

> Some people

> > may already have a mild, undetected IgAN which does become

> diagnosed by

> > coincidence after a strep infection.

> >

> > What happens with IgAN is not really understood by even the best

> > nephrologists and the most expert researchers in the field, but

> with the

> > knowledge we have about it at present, it seems like the problem

> is not with

> > having IgA immune complexes circulating in our blood (which

> everyone in the

> > world has), but rather a problem with their structure. To put it

> simply,

> > they end up binding with something in the kidneys where they

> shouldn't. The

> > defect appears at this time to be with the IgA immune complexes

> themselves,

> > rather than a defect in the kidneys themselves. Many experts think

> that IgAN

> > is simply the same thing as HSP (Henoch-Schönlein purpura), but

> with only

> > the one symptom in the kidneys. Nobody knows what causes HSP

> either. All we

> > know is that HSP appears to be triggered by bacterial or viral

> infections,

> > medicines, insect bites, vaccinations or exposure to chemicals or

> cold

> > weather. Is is the same with just IgAN without the other HSP

> symptoms? This

> > is unknown.

> >

> > Now, is there a precipitating event that causes triggers the IgA

> complexes

> > to become defective? Is it something that people who eventually

> develop IgAN

> > had all along since they were born, something they were genetically

> > pre-disposed to get whenever the right trgger came along? Or is

> there

> > something we are doing or being exposed to in life that causes

> this defect

> > to occur? Nobody can answer that. We, ie. medical science, simply

> do not

> > know.

> >

> > When people say they got an upper respiratory infection of some

> kind and had

> > visible blood in their urine, and then were diagnosed with IgAN,

> it could be

> > that the upper respiratory infection only caused the little flare-

> up of

> > hematuria (blood in urine), because the IgAN was already there,

> too mild to

> > be detected.

> >

> > Others may do so, but I can guarantee that I would never, ever

> suggest IgAN

> > starts with a single event. What I think happens is that for most

> people, a

> > single event just happens to cause the existing underlying

> condition to

> > generate hematuria, which gets the attention of the person or

> parent, and

> > then the doctor for what would have otherwise not have been

> noticed until

> > there was more renal failure. But of course, I have no proof of

> that. It's

> > only what I think.

> >

> > I think this because other people with IgAN never get the visible

> blood in

> > the urine. Like me, they just happen to have a routine medical

> examination

> > and they are found to have microscopic blood in the urine. Further

> > investigation eventually leads to diagnosis of IgAN.

> >

> > Some people are probably more prone than others to have the

> underlying IgAN

> > flare up into a more significant inflammation, which causes the

> hematuria

> > (usually harmless on its own), and/or proteinuria. Everyone with

> IgAN has

> > proteinuria, but for the majority, it just stays at a mild to

> moderate

> > level. For others, it flares up into a heavier proteinuria which

> must be

> > treated. Why? We don't know. There are a lot of things that aren't

> known

> > about all glomerular kidney diseases.

> >

> > Pierre

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely

supported by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

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Hi Phil,

It can take a substantial amount of time for the protein to resolve itself after

an acute episode or a flare-up, but I am not sure about 6 months. I have had it

take several months to go back to my baseline after flareups that I have had.

In a message dated 2/10/2005 1:11:45 PM Eastern Standard Time, " phil_m_palmer "

writes:

>

>

>Pierre,

>

>The Neph from Hopkins said that even with a benign case of Acute Glom.

>(the non-IGA, kind caused by staph) Protein can be in the urine for 6

>months before clearing.

>

>Do you believe this one?

>

>Phil

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

>http://groups.yahoo.com/group/iga-nephropathy/

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

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