Re: Pierre and some questions

[Guest guest]

Hi Ginger.

I'll try to answer your questions, and I won't mention smoking again As I

said before, I'm not an evangelist about it, but it's just something that

has to be mentioned. Of course, we all make our own choices and decisions

about these kinds of things.

The nephrologist your doctor consulted seems to have summed up the current

mainstream thinking pretty well, and I agree completely. This is where I

have differences with the IgA Foundation website (which I won't go into

here, because I don't really want to critisize anyone).

Albuterol is an asthma rescue inhaler, a bronchodilator. It won't do much

for you if you're not having an asthma attack. And if you were having asthma

attacks, then you should also be treated with an inhaled corticosteroid,

like Flovent for example, or other non-steroidal inhalers that are

available, to treat the airway inflammation that leads to asthma attacks, so

that you don't need to use the rescue inhaler. Now onto the other things.

Subnephrotic proteinuria just means that the amount of protein you are

leaking into your urine is below the range where it would be considered

" nephrotic syndrome " . It basically indicates that it is too mild to require

any specific treatment, like steroids (prednisone). So it's just your

common, garden variety mild proteinuria and hematuria that IgAN typically

causes. Subnephrotic range proteinuria is not heavy enough to be causing

other symptoms like edema (fluid retention) for instance.

Normal crcl means that your creatinine clearance is normal. This is the

amount of creatinine that the kidneys " clear " from your blood in a given

period (24 hours). It's a more precise indication of kidney function than

serum creatinine (the one that is obtained only from blood work). If it's

normal, then you must be at a very early, very mild stage of IgAN.

Creatinine, whether serum creatinine or creatinine clearance is the

nephrologist's main indicator of kidney function. From this, for even more

precision, they can calculate your glomerular filtration rate, but I don't

think you have to worry about this at this point.

Mild proteinuria and hematuria, and normal creatinine clearance is about

where my own IgAN story began 24 years ago. Incidentally, with kidney

disease, where there is proteinuria there is almost always also hematuria

(blood in urine, either visible or microscopic). They go hand in hand. It is

however possible to have just hematuria without proteinuria, but this isn't

common in IgAN.

The other stuff on the lab results from the 24 hour urine collection and

blood chemistry is really just routine checks on your various blood

electrolytes (like sodium and potassium), your blood chemistry (hemoglobin

and hematocrit, etc.) to make sure you aren't anemic, and a few more

esoteric items the lab checks that normally aren't a problem. I'm sure those

are all normal and absolutely nothing to worry about at all. The fact that

you don't have " crescents " in your biopsy results is very good news, because

the prognosis is worse when the pathologist sees crescents.

As to the ACE inhibitors, as I said before, these are most definitely high

blood pressure medications. But they have a special property that other

blood pressure meds don't have. They have actually been proven to reduce

proteinuria, and reducing proteinuria as much as possible is thought to be

helpful in the long run. In the past few years, it has become common

practice to prescribe an ACE inhibitor when there is proteinuria in IgA

nephropathy and other conditions like diabetic nephropathy. They even

prescribe a small dose of it for people who don't have high blood pressure.

Zestril is on brand of ACE inhibitor. It's a common one, but any will do.

Other well-tested and commonly used ones are Ramipril and Vasotec

(enalipril), but there are many others. So Zestril is a good choice. There

are other blood pressure meds that can be used if a patient has troublesome

side effects or proves to be allergic to ACE inhibitors, but ACE inhibitors

are absolutely the first choice to try.

Now, unfortunately, even though some IgANer's don't have it much, IgAN is

notorious for causing hard to control high blood pressure. You may or may

not have high blood pressure, but you are certainly at risk for developing

it, at the very least. The numbers you give suggest that you might have mild

hypertension, but it's hard to say, since blood pressure goes up and down

all day long, and is often falsely-elevated when it's being measured in the

doctor's office. To really know, it has to be found to be elevated on at

least three separate occasions, when measured properly. You are best to rely

on your doctor for making this diagnosis. I could go on and on about

hypertension and its treatment (I actually moderate another group on this

subject), but this is what you really need to know, and I don't want to

overwhelm you with information all at once. If it does turn out that you are

starting to have high blood pressure, the normal procedure would be to first

increase the dose of Zestril to the normal suggested maintenance dose, and

then, if that isn't enough, a small dose of hydrochlorothiazide (a diuretic)

would be added. Now, the thing with high blood pressure, as you've seen, is

that you don't stop the treatment if the blood pressure becomes normal,

because, it will eventually come back up again.

If you have any other questions, or if I've missed one, don't hesitate to

ask.

Pierre

Stages of development

> > > > >

> > > > >

> > > > > Pierre - thanks for the info on the microscopic hematuria.

> > > > >

> > > > > Sometimes we get so involved with our own situations that we

forget

> > > > > about others - I hope you personally are doing as well as possible

> > > > > with your IGAN. Let us know what difficulties or successes you

may

> >be

> > > > > having along the way if you would like. After my discussion with

> >Dr.

> > > > > Brewer of Baylor Medical Center in Houston - which as you may

known

> >is

> > > > > a reknown medical facility ( of Debakey and Cooley heart

transplant

> > > > > fame) - there is a strong consensus that medical research is about

> >to

> > > > > explode , which hopefully will apply to you and your struggle with

> > > > > IGAN ....

> > > > >

> > > > > How is your FAQ coming along - it might be interesting to get

> >some

> > > > > input from our members how this disease has progressed in

different

> > > > > ways and stages throughout their lives. Maybe we could get some

> > > > > timelines going with specific questions of when symptoms appeared

> >-how

> > > > > they appeared - what was the severity etc..... anyway just an

idea

> > > > > to kick around Steve fr

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Hello Pierre, I just wanted to say that despite my short time on this list,

you continue to amaze me. Your knowledge of many things is incredible and

your willingness to advize others, despite your own personal health issues,

is amazing. Thank you very much for your advice

Unfortunatly I will forget everything I just read in a few minutes, I don't

remember stuff too easily. But... over time I'm sure I'll pick some stuff up

and remember it

Today I went to see my chiropractor and asked Him to check my blood

pressure, which he did, and it was 132 over 96. Soo... not as bad as

yesterday, but still high.

I do have one question, what are crescents?

I am having problems with my email system right now so am not keeping up

with most msgs right now... takes too long just to read one msg. Sooo...

patience, hehe.

Oh, one more thing... I don't understand why the Dr would have prescribed me

an inhaler if its just for asthma? I don't have asthma? Actually it wasn't

my Dr, he was busy that day so it was some nurse lady. And he didn't mention

a thing about the inhaler when I went to see him the other day.

Ginger

>

>Reply-To: iga-nephropathyegroups

>To: <iga-nephropathyegroups>

>Subject: Re: Pierre and some questions

>Date: Wed, 13 Dec 2000 09:51:30 -0500

>

>Hi Ginger.

>

>I'll try to answer your questions, and I won't mention smoking again As

>I

>said before, I'm not an evangelist about it, but it's just something that

>has to be mentioned. Of course, we all make our own choices and decisions

>about these kinds of things.

>

>The nephrologist your doctor consulted seems to have summed up the current

>mainstream thinking pretty well, and I agree completely. This is where I

>have differences with the IgA Foundation website (which I won't go into

>here, because I don't really want to critisize anyone).

>

>Albuterol is an asthma rescue inhaler, a bronchodilator. It won't do much

>for you if you're not having an asthma attack. And if you were having

>asthma

>attacks, then you should also be treated with an inhaled corticosteroid,

>like Flovent for example, or other non-steroidal inhalers that are

>available, to treat the airway inflammation that leads to asthma attacks,

>so

>that you don't need to use the rescue inhaler. Now onto the other things.

>

>Subnephrotic proteinuria just means that the amount of protein you are

>leaking into your urine is below the range where it would be considered

> " nephrotic syndrome " . It basically indicates that it is too mild to require

>any specific treatment, like steroids (prednisone). So it's just your

>common, garden variety mild proteinuria and hematuria that IgAN typically

>causes. Subnephrotic range proteinuria is not heavy enough to be causing

>other symptoms like edema (fluid retention) for instance.

>

>Normal crcl means that your creatinine clearance is normal. This is the

>amount of creatinine that the kidneys " clear " from your blood in a given

>period (24 hours). It's a more precise indication of kidney function than

>serum creatinine (the one that is obtained only from blood work). If it's

>normal, then you must be at a very early, very mild stage of IgAN.

>Creatinine, whether serum creatinine or creatinine clearance is the

>nephrologist's main indicator of kidney function. From this, for even more

>precision, they can calculate your glomerular filtration rate, but I don't

>think you have to worry about this at this point.

>

>Mild proteinuria and hematuria, and normal creatinine clearance is about

>where my own IgAN story began 24 years ago. Incidentally, with kidney

>disease, where there is proteinuria there is almost always also hematuria

>(blood in urine, either visible or microscopic). They go hand in hand. It

>is

>however possible to have just hematuria without proteinuria, but this isn't

>common in IgAN.

>

>The other stuff on the lab results from the 24 hour urine collection and

>blood chemistry is really just routine checks on your various blood

>electrolytes (like sodium and potassium), your blood chemistry (hemoglobin

>and hematocrit, etc.) to make sure you aren't anemic, and a few more

>esoteric items the lab checks that normally aren't a problem. I'm sure

>those

>are all normal and absolutely nothing to worry about at all. The fact that

>you don't have " crescents " in your biopsy results is very good news,

>because

>the prognosis is worse when the pathologist sees crescents.

>

>As to the ACE inhibitors, as I said before, these are most definitely high

>blood pressure medications. But they have a special property that other

>blood pressure meds don't have. They have actually been proven to reduce

>proteinuria, and reducing proteinuria as much as possible is thought to be

>helpful in the long run. In the past few years, it has become common

>practice to prescribe an ACE inhibitor when there is proteinuria in IgA

>nephropathy and other conditions like diabetic nephropathy. They even

>prescribe a small dose of it for people who don't have high blood pressure.

>Zestril is on brand of ACE inhibitor. It's a common one, but any will do.

>Other well-tested and commonly used ones are Ramipril and Vasotec

>(enalipril), but there are many others. So Zestril is a good choice. There

>are other blood pressure meds that can be used if a patient has troublesome

>side effects or proves to be allergic to ACE inhibitors, but ACE inhibitors

>are absolutely the first choice to try.

>

>Now, unfortunately, even though some IgANer's don't have it much, IgAN is

>notorious for causing hard to control high blood pressure. You may or may

>not have high blood pressure, but you are certainly at risk for developing

>it, at the very least. The numbers you give suggest that you might have

>mild

>hypertension, but it's hard to say, since blood pressure goes up and down

>all day long, and is often falsely-elevated when it's being measured in the

>doctor's office. To really know, it has to be found to be elevated on at

>least three separate occasions, when measured properly. You are best to

>rely

>on your doctor for making this diagnosis. I could go on and on about

>hypertension and its treatment (I actually moderate another group on this

>subject), but this is what you really need to know, and I don't want to

>overwhelm you with information all at once. If it does turn out that you

>are

>starting to have high blood pressure, the normal procedure would be to

>first

>increase the dose of Zestril to the normal suggested maintenance dose, and

>then, if that isn't enough, a small dose of hydrochlorothiazide (a

>diuretic)

>would be added. Now, the thing with high blood pressure, as you've seen, is

>that you don't stop the treatment if the blood pressure becomes normal,

>because, it will eventually come back up again.

>

>If you have any other questions, or if I've missed one, don't hesitate to

>ask.

>

>Pierre

>

>

>

>

>

> Pierre and some questions

>

>

> > Hello Pierre. I don't mind your advice about the smoking, I know I

>shouldn't

> > be doing it and the truth be told, I'm not ready to quit. Its good to

>know

> > what I'm doing to my body, but I have my own concerns about quitting,

>which

> > is why I haven't done it yet. I never thought of it in any way a

>connection

> > with the igan.

> >

> > As for the inhaler... hmm... it says Albutrol?

> >

> > Also, I went to see my Dr today who had the results of the 24 hour urine

> > test I did. He also emailed a nephrologist about the IgAN, and this is

>what

> > my Dr said to the Nephro(I got a copy of the email!) " I have a patient

>that

> > has a diagnosis for IgA, she came to see me for some pain likely

>unrelated

> > to her diagnosis. I researched IgA a bit and found recommendations for a

> > follow up (then he posted the results of the 24 hr urine test). My

>question

> > is, does anything else need to be done. She has protein in her urine,

>but

> > she says she has had this from when she was diagnosed. To my knowledge,

>she

> > was not treated. If it is not too much of a problem, please advise. If

>you

> > want to see her, I will send her over.

> > And then the Nephro replied " There is no treatment for IgA nephropathy.

>In

> > classic IgA nephropathy there is haematuria with proteinuria and people

>have

> > tried various therapies including fish oil, immunosuppressive

>medications,

> > however, nothing has been shown to effect the outcome. Steroids are only

> > indicated if on renal biopsy these patients have cresents and have very

> > aggressive disease with progressive renal failure. This patient has only

> > subnephrotic proteinuria and normal crcl, therefore, just use Ace

>inhibitors

> > in her. "

> >

> > The end, hehe. Ok... what does subnephrotic proteinuria and normal crcl,

> > mean? I have the list of the 24 hr urine results test that my Dr showed

>to

> > the other Dr, but none of it makes sense. He did say the proteine is

>high,

> > 961 h? and... Creat 1.1 (which he said is fine). None of the other stuff

> > makes sense to me.

> >

> > Also, he started talking about ace inhibitors then asked me what blood

> > pressure medication I was on in the past and I told Him Zestril and he

>says

> > " Oh good! That *is* an ace inhibitor and one of the ones we like to

>use " .

>I

> > didn't know that... he xplained it kind of, but perhaps Pierre can

>explain

> > it to me again, what is an ace inhibitor? SIlly me always thought it was

> > something other than a blood pressure med? I had been happy that since I

> > moved last year my blood pressure has been normal, well today it was 142

> > over 102, so the nurse took it again and then it was 132 over 100...

>which

> > is high for what my high used to be. Guess I shouldn't have been so

>excited

> > about normal blood pressure, didn't last long enough... so here I go,

>back

> > on the meds.

> >

> >

> > Ginger

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[Guest guest]

You're welcome Ginger, and thanks for the compliment. I don't mean to sound

like a know-it-all, but you can't help but to pick up a few things after

over 20 years. I had to find these things out for myself, and it's my

pleasure to help other people with the disease when I can. I've always felt

that doctors just don't explain things enough.

Crescents is a pattern the pathologist sees in the biopsy specimens.

Technically, it's a proliferation of cells in the Bowman's space, which is

part of a nephron. It sort of looks like a crescent on the

immunofluorescence slides, which, I guess, is why they call it crescents.

It's better not to have them, but it's not the end of the world if you do.

Your blood pressure still looks to be in the mild to moderate area. The

systolic (high figure) is really pretty normal. A small dose of ACE

inhibitor should take care of it. The funny thing about my telling everybody

about ACE inhibitors is that I can't even take them myself anymore, since

I've proven to be allergic to them. I had to take about five different ones

before it became obvious though.

Pierre

Pierre and some questions

> >

> >

> > > Hello Pierre. I don't mind your advice about the smoking, I know I

> >shouldn't

> > > be doing it and the truth be told, I'm not ready to quit. Its good to

> >know

> > > what I'm doing to my body, but I have my own concerns about quitting,

> >which

> > > is why I haven't done it yet. I never thought of it in any way a

> >connection

> > > with the igan.

> > >

> > > As for the inhaler... hmm... it says Albutrol?

> > >

> > > Also, I went to see my Dr today who had the results of the 24 hour

urine

> > > test I did. He also emailed a nephrologist about the IgAN, and this is

> >what

> > > my Dr said to the Nephro(I got a copy of the email!) " I have a patient

> >that

> > > has a diagnosis for IgA, she came to see me for some pain likely

> >unrelated

> > > to her diagnosis. I researched IgA a bit and found recommendations for

a

> > > follow up (then he posted the results of the 24 hr urine test). My

> >question

> > > is, does anything else need to be done. She has protein in her urine,

> >but

> > > she says she has had this from when she was diagnosed. To my

knowledge,

> >she

> > > was not treated. If it is not too much of a problem, please advise. If

> >you

> > > want to see her, I will send her over.

> > > And then the Nephro replied " There is no treatment for IgA

nephropathy.

> >In

> > > classic IgA nephropathy there is haematuria with proteinuria and

people

> >have

> > > tried various therapies including fish oil, immunosuppressive

> >medications,

> > > however, nothing has been shown to effect the outcome. Steroids are

only

> > > indicated if on renal biopsy these patients have cresents and have

very

> > > aggressive disease with progressive renal failure. This patient has

only

> > > subnephrotic proteinuria and normal crcl, therefore, just use Ace

> >inhibitors

> > > in her. "

> > >

> > > The end, hehe. Ok... what does subnephrotic proteinuria and normal

crcl,

> > > mean? I have the list of the 24 hr urine results test that my Dr

showed

> >to

> > > the other Dr, but none of it makes sense. He did say the proteine is

> >high,

> > > 961 h? and... Creat 1.1 (which he said is fine). None of the other

stuff

> > > makes sense to me.

> > >

> > > Also, he started talking about ace inhibitors then asked me what blood

> > > pressure medication I was on in the past and I told Him Zestril and he

> >says

> > > " Oh good! That *is* an ace inhibitor and one of the ones we like to

> >use " .

> >I

> > > didn't know that... he xplained it kind of, but perhaps Pierre can

> >explain

> > > it to me again, what is an ace inhibitor? SIlly me always thought it

was

> > > something other than a blood pressure med? I had been happy that since

I

> > > moved last year my blood pressure has been normal, well today it was

142

> > > over 102, so the nurse took it again and then it was 132 over 100...

> >which

> > > is high for what my high used to be. Guess I shouldn't have been so

> >excited

> > > about normal blood pressure, didn't last long enough... so here I go,

> >back

> > > on the meds.

> > >

> > >

> > > Ginger

>

>

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