Hello

January 10, 2004

Hi . Welcome to the group. We have quite a few mothers of children and

teens with IgAn here. They all seem to do well after the initial flurry of

activity. With a serum creatinine of 1.1, there is probably no serious

permanent damage to the kidneys at this point.

Are you sure that drug isn't Lisinopril?

Pierre

hello

> Hi

> My name is , my son is 17 and was just recently diagnosed

> with this disease, he had a kidney biopsy just before christmas and

> confirmed what the nephrologist had suspected. His kidney functions

> are okay, creat. is 1.1, 24hr urine was 1.6 grams. Neph said that

> his kidneys showed " minimal damage " but didn't give me a percentage

> of kidney function. was stated on ace inhibitor Lipase 5mg a

> day and 4 grams of fish oil a day. He is taking this well,

> considering he's 17 and trying to finish school and get ready for

> college, so Igan is low on his list of priorities, but as his mom I'm

> scared to death, especially since it's all a maybe disease. " he may

> develop end stage renal disease, or he may be fine and just have to

> take meds for the rest of his life " It's very frustrating to try and

> get specific info on what we need to do to keep the disease from

> progressing, or even if there is anything we can do to keep it from

> progressing. It helps to know there is someplace I can go to talk or

> find info. thanks

>

January 10, 2004

Hi ,

Welcome to our group! I am just so sorry your son has been diagnosed

with IgAN though. I was first symptomatic a few years younger than your son

is, and now in my 40's I am still not yet on dialysis.

The facts are that only somewhere between 30-50% of people with IgAN end up

with kidney failure. For the majority, it is a fairly benign condition that

just needs monitoring, and usually ACE inhibitors are taken because they have a

renal protective measure.

A great starting place is our sister site www.igan.ca where you can learn so

much about IgAN from a patient's perspective. Also, feel free to ask any

specific questions.

His lab results look very good, so hopefully that is encouraging to you.

Welcome again!

January 10, 2004

,

My son was diagnosed at 13 with almost identical labs as your son's,

although the biopsy report showed " moderate damage " (crescents) which

apparently put him in a moderate risk range for progression to kidney

failure. He was on prednisone for about 15 months and then just on

lisinopril (ACE inhibitor) and fish oil for about 5 years and did fairly

well. Then his functioning took a dramatic drop and within a year and a

half, he was in end-stage renal failure. However, he was able to manage the

disease for two more years before we did a transplant when he was 21. IgAN

is a frustrating disease to try to predict what will happen. There

apparently are several subtypes, some of which are more benign and some of

which are more aggressive. Because at diagnosis my son's kidney function was

normal and amount of protein in urine not dramatically high, his nephs

thought his prognosis was good. However, the amount of scarring (crescents)

noted in the biopsy may have been the better predictor of the actual disease

progression. In your son's case, perhaps the " minimal damage " notation

suggests a more positive prognosis.

Good luck -

Betsy