Re: New to group - Biopsy Question

[Guest guest]

Hi ,

A very warm welcome to you! I am glad you found your way to us.

Your question is one that comes up fairly often. The general consensus is

that unless biopsy results would bring about a change in the course of

treatment, most Nephrologists will not biopsy until the protein is higher. The

standard course of treatment is Ace inhibitors, such as Enalapril and as long as

your

labs look good, and your blood pressure is stable, I think most Nephs would

take the approach yours is to hold off on biopsy. There is some inherent risk

in the biopsy, and if it can be avoided, many Nephrologists would prefer to

not put the patient through a biopsy.

A course of Prednisone treatment is normally reserved for controlling high

protein spill. There are serious side effects to Prednisone. Not many Nephs

would treat with Prednisone for a protein spill of 1000 mg/24 hours. I am not a

doctor, just a fellow patient so please do not take what I am writing as

medical advise. I just know I would prefer personally to avoid the Prednisone

if

my protein was that low.

Now if your creatinine is increasing, and protein spill is increasing, that

may be another story. It is very hard to say not knowing your history or

trends. My comments are more how most Nephs will treat IgAN in general.

I am sorry you had a reason to find your way here , but I hope you find

lots of information and encouragement here.

Welcome again!

In a message dated 11/16/2004 4:49:19 PM Pacific Standard Time,

lindanee@... writes:

>

> Hello everyone. I just found this group on my searing for answers

> quest. This is great! Look forward to getting to know everyone.

>

> Here is my question. I have been seeing a nephrologist for 3

> years. I have gross hemarturia at least once a month and blood in

> my urine all the time. My protein levels in my urine have been as

> high as 2000 but now that I am taking Enalapril, my protein level

> has reduced to about 1000. My doctor feels that until my protein

> level is at 3000 he does not want to do a biopsy because he said

> there is no treatment. But, I have been feeling very sick the last

> 2 months and decided to get a second opinion. The new nephrologist

> said he also believes I do have Iga and wants me to have a biopsy to

> confirm. He said he then thinks I should start a 6 month steroid

> treatment. Has anyone else been along this path? Did you opt for

> the biopsy? Steroid treatment? Or should I listen to my other

> nephrologist and wait until my protein levels go up to 3000? HELP?!?!

>

> Thanks for listening.

>

>

[Guest guest]

I had the biopsy pretty early and was told that there was no treatment and that

steroids wouldn't help. Now that was about 5 years ago so perhaps things have

changed (?)

Good luck - I know how difficult it is to gather information and then have to

decide what you should do.

New to group - Biopsy Question

Hello everyone. I just found this group on my searing for answers

quest. This is great! Look forward to getting to know everyone.

Here is my question. I have been seeing a nephrologist for 3

years. I have gross hemarturia at least once a month and blood in

my urine all the time. My protein levels in my urine have been as

high as 2000 but now that I am taking Enalapril, my protein level

has reduced to about 1000. My doctor feels that until my protein

level is at 3000 he does not want to do a biopsy because he said

there is no treatment. But, I have been feeling very sick the last

2 months and decided to get a second opinion. The new nephrologist

said he also believes I do have Iga and wants me to have a biopsy to

confirm. He said he then thinks I should start a 6 month steroid

treatment. Has anyone else been along this path? Did you opt for

the biopsy? Steroid treatment? Or should I listen to my other

nephrologist and wait until my protein levels go up to 3000? HELP?!?!

Thanks for listening.

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home page:

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

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

Thank you

[Guest guest]

Hi ,

Welcome to the group I'm glad you found us. I am sorry to hear of your

diagnosis though. touched on the norm for most nephs. Protein spill of

over 3000 and worsening labs tends to be the point where a biopsy is done. As

said there is risk involved with the biopsy. Also steroid treatment is no

cake walk and all the pros and cons should be looked at. I've been on

prednisone for over a year due to protein spill of over 3000...it's done the job

in bringing it down but it hasn't been an easy year either.

Depending on your creatinine level, your other labs and how your b/p is

holding a biopsy may do nothing to change your course of treatment the only

thing it would give you is a definite diagnosis of IgAN.

There is a new school of thought out there (I can't find the article I was

reading now about it) regarding early treatment with steroids showing good

results. If I can find it again I'll post the link.

Amy G.

New to group - Biopsy Question

Hello everyone. I just found this group on my searing for answers

quest. This is great! Look forward to getting to know everyone.

Here is my question. I have been seeing a nephrologist for 3

years. I have gross hemarturia at least once a month and blood in

my urine all the time. My protein levels in my urine have been as

high as 2000 but now that I am taking Enalapril, my protein level

has reduced to about 1000. My doctor feels that until my protein

level is at 3000 he does not want to do a biopsy because he said

there is no treatment. But, I have been feeling very sick the last

2 months and decided to get a second opinion. The new nephrologist

said he also believes I do have Iga and wants me to have a biopsy to

confirm. He said he then thinks I should start a 6 month steroid

treatment. Has anyone else been along this path? Did you opt for

the biopsy? Steroid treatment? Or should I listen to my other

nephrologist and wait until my protein levels go up to 3000? HELP?!?!

Thanks for listening.

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

[Guest guest]

Hello and welcome,

I can't speak to the quesion of prednisone, but can share my biopsy experience.

Unlike the other folks who posted, I was biopsied with less then 1000 protien

spill, I

was around 800 and my creatinine was 1.2, my creatinine clearence was 60-70. My

neph wanted to biopsy saying it was the only way to confirm the diagnosis, I

didn't

want to at all. I got two second opinions and both of those nephs concured- do

the

biopsy. So I did, that was eight or nine years ago. Today the approach may be

different. I am currently waiting for my last labs, but expect my protien to be

about

800 and my creatinine to be about 2.2, and creatinine clearence to be in the

30's. I

take fish oil, an ACE inhibitor, sodium bicarb (to help with my potassium

levels),

calcium, iron, get procrit shots, and eat a low protien low patassium diet.

Did the new neph go into why he advocates prednisone for you now? Talk with your

doctors, go in armed with questions and open up a dialogue. While it may not

feel

like it, this is a working relationship.

I am happy you found this group, I wish I had many years ago. Take care...

[Guest guest]

Welcome to the group .

Well, you saw two different nephrologists and you got two opinions. That's

not unusual with diseases that have no real treatments. I wasn't biopsied

until my proteinuria was about 800mg/day, and that was more than a decade

after blood first appeared in my urine. Even then, my nephrologist at the

time was of two minds about it. So, basically, they are both right. The

biopsy probably won't make any difference in treatment, ultimately, but it

WILL give you a positive diagnosis. Both are valid viewpoints, really. The

neph who isn't for the biopsy at this time, probably will be eventually.

Proteinuria of 1000mg/day may or may not be enough to use steroids. This is

relatively mild proteinuria, so, a case can be made that the enalapril by

itself is working. The thing with steroids is that they can have wicked side

effects in the longer term, so a proteinuria of only 1000mg/day might not be

worth it. Opinions about that vary in the world of nephrology.

About waiting for proteinuria to go to 3000mg.... Proteinuria is not like

kidney function, which may slowly but gradually decline over time.

Proteinuria isn't related to actual kidney function. It's a separate thing.

It may flare up occasionally, or it may not. It's not something that

necessarily increases over time. I reached end-stage renal disease after 25

years of IgAN, and I never had proteinuria much greater than 1000mg/day.

Pierre

New to group - Biopsy Question

>

>

>

> Hello everyone. I just found this group on my searing for answers

> quest. This is great! Look forward to getting to know everyone.

>

> Here is my question. I have been seeing a nephrologist for 3

> years. I have gross hemarturia at least once a month and blood in

> my urine all the time. My protein levels in my urine have been as

> high as 2000 but now that I am taking Enalapril, my protein level

> has reduced to about 1000. My doctor feels that until my protein

> level is at 3000 he does not want to do a biopsy because he said

> there is no treatment. But, I have been feeling very sick the last

> 2 months and decided to get a second opinion. The new nephrologist

> said he also believes I do have Iga and wants me to have a biopsy to

> confirm. He said he then thinks I should start a 6 month steroid

> treatment. Has anyone else been along this path? Did you opt for

> the biopsy? Steroid treatment? Or should I listen to my other

> nephrologist and wait until my protein levels go up to 3000? HELP?!?!

>

> Thanks for listening.

>

>

>

>