Re: [igan]another newcomer

[Guest guest]

Hello out there,

My name is Genevieve and I've been reading your postings for the past few

days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

Thursday, and tomorrow is my first appointment since the nephrologist

called to tell me the news. Anyway, I was really impressed with how

supportive, encouraging and upbeat everyone seems so I thought I'd write in

myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills of

California near Yosemite National Park. It's a blast, I love it. This

disease, however, has put a damper on things. I'm pretty nervous about

it...especially the drugs. The doc told me he was going to put me on

prednisone and cytoxin for a while, then after a few months switch the

cytoxin to imuran...what do you guys think of those? I've been on prednisone

before for poison oak and swelled up like the marshmellow man...but the doc

swears if I only take it every other day, like he's going to prescribe, I

shouldn't have that problem. My family back in Illinois is freaking out, I

think my mother is armed with a scalpel, ready to stockpile all my

relatives' kidneys in the freezer should I need a new one...but I'm

concerned with more day to day questions, like will I still be able to go

out drinking with my friends, will I still fit into my new jeans, and will

the guy I just started seeing jump ship because of all this.

The biggest things I have going for me now are a very large, very close

extended family and a tight group of friends that keeps me laughing. As one

of my buddies said, " At least it's not NECROpathy. Then you'd be dead! " Sick

sense of humor, but it makes me smile!

Thanks to whoever posted the list of questions, I saw them online yesterday

and plan on taking them to my appointment tomorrow. And thanks for letting

me tune in the past few days before I had the guts to write something

myself. I hope everyone's doing well--

take care

gen

[Guest guest]

Hi Genevieve,

A very warm welcome to our little corner of the Internet! I am sorry you

have been diagnosed with IgAN and I do understand it can be a little

overwhelming

at first.

As Pierre said, if you are spilling lots of protein, Prednisone is fairly

commonly prescribed. The Cytoxan is usually reserved for the more aggressive

cases since it is a more taxing treatment physically. Do you know what your

creatinine or creatinine clearance levels are?

Having supportive friends and family really help to make the journey easier

to bear. I always think that there are so many worse things I could have had,

so I really count my blessings every day, even though I am fairly close to

needing dialysis myself. The area you live in is indeed beautiful! That has to

be a plus too :-) I live in Northern California too, and get up that way from

time to time.

Please let us know how your first doctor visit goes, and again we welcome you

and are here to support you along the way.

[Guest guest]

Hi Genevieve.

Welcome to the group. That sounds like a wonderful place to live and work.

We often hear of the drugs you mentioned being used. Prednisone is common,

as it's usually the first drug used to bring heavy proteinuria under

control. There's a very good chance that alternate day dosing will prevent

the usual side effects. It's common practice now. There is quite a bit of

useful information on the website, if you haven't seen it already. It's at

www.igan.ca

Looking forward to your continued participation in the group.

Pierre

Re: another newcomer

> Hello out there,

>

> My name is Genevieve and I've been reading your postings for the past few

> days, as I was just diagosed Tuesday with IgaN as well. My biopsy was last

> Thursday, and tomorrow is my first appointment since the nephrologist

> called to tell me the news. Anyway, I was really impressed with how

> supportive, encouraging and upbeat everyone seems so I thought I'd write

in

> myself. I'm 27, and I work as a journalist in the Sierra Nevada foothills

of

> California near Yosemite National Park. It's a blast, I love it. This

> disease, however, has put a damper on things. I'm pretty nervous about

> it...especially the drugs. The doc told me he was going to put me on

> prednisone and cytoxin for a while, then after a few months switch the

> cytoxin to imuran...what do you guys think of those? I've been on

prednisone

> before for poison oak and swelled up like the marshmellow man...but the

doc

> swears if I only take it every other day, like he's going to prescribe, I

> shouldn't have that problem. My family back in Illinois is freaking out, I

> think my mother is armed with a scalpel, ready to stockpile all my

> relatives' kidneys in the freezer should I need a new one...but I'm

> concerned with more day to day questions, like will I still be able to go

> out drinking with my friends, will I still fit into my new jeans, and will

> the guy I just started seeing jump ship because of all this.

>

> The biggest things I have going for me now are a very large, very close

> extended family and a tight group of friends that keeps me laughing. As

one

> of my buddies said, " At least it's not NECROpathy. Then you'd be dead! "

Sick

> sense of humor, but it makes me smile!

>

> Thanks to whoever posted the list of questions, I saw them online

yesterday

> and plan on taking them to my appointment tomorrow. And thanks for letting

> me tune in the past few days before I had the guts to write something

> myself. I hope everyone's doing well--

>

> take care

> gen

>