Re: New to the group

[Guest guest]

Welcome Markie )!!!!!!!! I joined online last Monday (technically it was

Sunday night, but because of the 3 hour time difference, they put it as Monday)

and really love it so far. Had a great 1st week WI and look forward to more.

I did meetings years ago, but for now, this is better. It's about $2 more than

the once a month plan we have here in Cali, but I can still monitor myself

weekly. When I decide what I want to do, I might go back to meetings to get

lifetime.

April42005@... wrote:

I joined Weight Watchers online last Thursday.

Be a F.R.O.G.

Living in the F.O.G.

Gymmie in Cali

Courtesty of Tae Bo 2 hours a day, 5 days a week

[Guest guest]

Rita, thanks for the reply. Acutally she consulted with my neph and he said

I didn't have crescents. The nephs also called me back today and told me I

could drop my pred from 80 to 50 and my cytoxan from 200 to 150. Apparently he

has consulted with some other nephs and he originally diagnosed that amount

for my height and weight but then they thought that 80 and 150 was more

appropriate. I haven't taken any blood tests or anything and I've only been on

it a

week, so I'm a little worried that I'm being switched already. My question as

to protein is what level does it have to go down to before I don't see the

foam or froth as they call it?

[Guest guest]

Have you considered getting a second opinion? With no crescents, and your

lab values not severely elevated, it is highly highly unusual to be treated with

such a strong drug as Cytoxan. Only a very few, less than a handful I

believe, have been treated with Cytoxan, and those cases were to prevent

rejection

or for very aggressive forms of IgAN. Does your Nephrologist treat many cases

of IgAN?

The norm would be to give the Prednisone a try first and see if that would

lower the protein before turning to a drug like Cytoxan.

I am a bit concerned about your treatment, but I am not a doctor either.

Your Nephrologist may have knowledge leading him to this course of treatment

that

I am not aware of.

In a message dated 7/28/2004 12:21:12 PM Pacific Daylight Time,

MB10spro@... writes:

> Rita, thanks for the reply. Acutally she consulted with my neph and he

> said

> I didn't have crescents. The nephs also called me back today and told me I

> could drop my pred from 80 to 50 and my cytoxan from 200 to 150. Apparently

> he

> has consulted with some other nephs and he originally diagnosed that amount

> for my height and weight but then they thought that 80 and 150 was more

> appropriate. I haven't taken any blood tests or anything and I've only been

> on it a

> week, so I'm a little worried that I'm being switched already. My question

> as

> to protein is what level does it have to go down to before I don't see the

> foam or froth as they call it?

[Guest guest]

, yeah he has told me he has quite a few IGAN patients. He works in a

Nephrology consulatant group of 4 doctors and he seems to stay quite busy. I'm

sure his experience level is not bad, but I have found a friend whose sister

is a Neph and I am going to run all the info by her too, because I am not

hearing a lot of people on the cytoxan. At this point I don't know much

obviously

and he made it sound like this was out of the latest studies.

My first signs of IGAN only started in the beginning of this year, so he may

be treating it as an agressive case. My first positive protein came in May

after a 5 week long flu-type sickness, that I had never had before. I'm not

sure if I ever had an incident of protein before that or have lived with it as

most have on this board. I wasn't as hypersensitive to these things before. My

first high BP only came in June, it was fine in May and when I gave blood to

the blood bank in February. My creatine is stable but my BUN has risen from

16 to 19 to 33 in subsequent blood tests and that may be why he is treating it

agressively, I don't know.

Thx,

Mike

[Guest guest]

You might always see foam or froth. I've had it steady for 25 years. It

doesn't take much proteinuria to cause it. It's uncommon for IgAN patients

to have no proteinuria at all. Usually, if it's under 1000mg/day, it's not

too bad.

Pierre

Re: New to the group

> Rita, thanks for the reply. Acutally she consulted with my neph and he

said

> I didn't have crescents. The nephs also called me back today and told me

I

> could drop my pred from 80 to 50 and my cytoxan from 200 to 150.

Apparently he

> has consulted with some other nephs and he originally diagnosed that

amount

> for my height and weight but then they thought that 80 and 150 was more

> appropriate. I haven't taken any blood tests or anything and I've only

been on it a

> week, so I'm a little worried that I'm being switched already. My

question as

> to protein is what level does it have to go down to before I don't see the

> foam or froth as they call it?

>

[Guest guest]

Hi Mike,

I will feel better when your friend's sister who is a Neph checks things out

for you then. My only concern is the Cytoxan because that is a powerful drug

and usually reserved for only the most severe cases.

In a message dated 7/28/2004 4:47:57 PM Pacific Daylight Time,

MB10spro@... writes:

> , yeah he has told me he has quite a few IGAN patients. He works in a

>

> Nephrology consulatant group of 4 doctors and he seems to stay quite busy.

> I'm

> sure his experience level is not bad, but I have found a friend whose sister

>

> is a Neph and I am going to run all the info by her too, because I am not

> hearing a lot of people on the cytoxan.

[Guest guest]

Hi

Welcome to the group.

You certainly have a lot of health issues on your plate. You remind me of

myself exactly this time of year in 1993. I had had blood in my urine for

about 16 years, and then some protein, but nobody thought it necessary to

biopsy until 1993. I had my biopsy in August, and then I had to wait six

weeks until the end of September to find out the results. So, our timings

are almost identical, except you are 11 years later.

I don't think I would follow the Atkins diet, but other than that, you

probably don't really need to change anything. If you do, there's plenty of

time for that, and your nephrologist will let you know. It depends how

advanced your renal failure is, and you usually don't absolutely need to be

on a renal diet until it's fairly advanced - like 30% kidney function or so.

But Atkins is particularly fat and high in protein, as a rule, so, it's

probably not a good idea. The extra protein is harder for diseased kidneys

to process (well, not the protein itself, but the byproducts of protein

metabolism). If you have hypertension, it probably wouldn't hurt to cut back

on sodium, but, as I said, it's not like there's any urgency to do anything.

A few more weeks waiting to see your neph won't make any difference, really.

People with kidney disease are referred to a renal dietician at the

appropriate time. It really has to be a " renal " dietician, in my experience.

Your doctor will probably tell you to continue your exercise routine. There

is usually no reason to stop. Exercise doesn't harm the kidneys, and in

fact, it's good for them.

Pierre

new to the group

>

> Hi, My name is and I am 36 years old and live in Vancouver,

> BC Canada. I have recently been diagnosed with IgA. I haven't even

> been able to talk to my nephrologist about it directly, due to

> summer vacation etc. I went in for a biopsy in July, that at the

> time, they thought failed because they didn't get enough in the

> first shot in. They couldn't continue because they caused a small

> bleed in my kidney. But my nephrologist called me and said they in

> fact did get enough and the diagnosis was confirmed, on my

> voicemail. I won't be able to get in to see her until mid september.

>

> So I have been going a little stir crazy with worrying trying to

> figure out what to do and not to do. There is a lot of information

> out there but I am still confused, that is why I thought it would be

> good to join the list and talk to people who " have been there done

> that " . I am on a similar group of parents with children with Opitz

> syndrome, of whom my eldest son, 7 years old has been diagnosed.

> Opitz is a midline affecting syndrome. He had open heart surgery

> when he was 2 and many other operations and is severely

> developmentally delayed. I have had a pacemaker for almost 10 years,

> family hereditary syndrome called Sick Sinus Syndrome and now with

> my kidney issue, I am actually thinking I may have opitz too.

>

> I am sorry if it sounds like I am rambling and this is a little

> long. I was originally noted to have " blood in my urine " almost 16

> years ago when I was pregnant with my daughter. It elevated slightly

> with each of my pregnancies and combined with mild hypertension. The

> doctors really didn't think anything of it because it didn't

> progress. Then I went back to my original family doctor early this

> year, who said I had hypertension and thus the battery of tests

> ensued culminating with the biopsy.

>

> I am really very scared about what this means for me long term and

> well short term too. For example should I plan to see a nutrionist

> and find out what I can or should change in my diet? I went on

> Atkins last year and lost 40lbs, began to run 4x per week and felt

> actually pretty good. But the literature I have read now says that

> Atkins is not a good diet for people with kidney disease. I would

> still like to lose another 15lbs and continue with my excercise

> routine...of which I reduced because of fatigue. Meanwhile I am also

> testing my pacemaker because the battery and model may need

> replacing in the near future. I am worried about my kids and

> ensuring that I am as healthy as possible to look after them

> properly. My husband is older than I by 12 years and has Type I

> diabetes and I have been the primary financial provider and he has

> stayed home to care for our children. I always assumed his health

> issues would be our biggest concern, and then our son's and I

> convinced myself that I was invincible...smile.

>

> Now you all know a little more about me and my situation. I look

> forward to getting to know you all and learning from your valuable

> experiences. Thank you for listening. I promise to be less wordy in

> the future. S

>

>

[Guest guest]

Welcome to the group I'm glad you found us.

Don't worry about being wordy, we don't mind. I'm 35 and was diagnosed in

Sept '03 with the rapidly advancing form of IgAN. It sure sounds like you have

your plate full between your husband, son, and yourself. The few weeks between

now and your nephs appointment will move quickly and waiting to make any changes

won't hurt anything in the long term. Actually waiting is hard but getting a

call from your neph saying " I need to see you right away, how soon can you be

here. " four days after your biopsy is even harder...talk about fear factor. If

your neph got the results back and feels comfortable enough letting you wait

until Sept then there probably isn't much you are going to need to change.

The Atkins route isn't good for the kidneys so I would consider making a

change perhaps to Weight Watchers or something where your daily protein intake

isn't as high. You may already be on a reduced sodium diet due to your

hypertension, if not you might want to ask your neph about that. The rest of

the changes are going to be based on your labs and what your values are. You

don't want to start restricting things you don't need to as that can cause

additional problems. For example my dietician lowered my phosphorus level down

too much and it started causing my tongue and extremities to go numb. Once we

added some foods back into my diet the numbness went away. Keep exercising when

you can. I just started going to Curves after nearly a year of extreme fatigue

(daily naps sort of thing) and I now have the energy to make it thru the day. I

have to fight the fatigue to get myself up to work out but once done I'm

energized enough to make it thru the day.

There is a list of questions to ask your neph on the Yahoo Groups site at

http://health.groups.yahoo.com/group/iga-nephropathy/files/ It's titled

" Questions to ask your Nephrologist.doc " and is about halfway down the files

page.

Welcome again,

Amy

new to the group

Hi, My name is and I am 36 years old and live in Vancouver,

BC Canada. I have recently been diagnosed with IgA. I haven't even

been able to talk to my nephrologist about it directly, due to

summer vacation etc. I went in for a biopsy in July, that at the

time, they thought failed because they didn't get enough in the

first shot in. They couldn't continue because they caused a small

bleed in my kidney. But my nephrologist called me and said they in

fact did get enough and the diagnosis was confirmed, on my

voicemail. I won't be able to get in to see her until mid september.

So I have been going a little stir crazy with worrying trying to

figure out what to do and not to do. There is a lot of information

out there but I am still confused, that is why I thought it would be

good to join the list and talk to people who " have been there done

that " . I am on a similar group of parents with children with Opitz

syndrome, of whom my eldest son, 7 years old has been diagnosed.

Opitz is a midline affecting syndrome. He had open heart surgery

when he was 2 and many other operations and is severely

developmentally delayed. I have had a pacemaker for almost 10 years,

family hereditary syndrome called Sick Sinus Syndrome and now with

my kidney issue, I am actually thinking I may have opitz too.

I am sorry if it sounds like I am rambling and this is a little

long. I was originally noted to have " blood in my urine " almost 16

years ago when I was pregnant with my daughter. It elevated slightly

with each of my pregnancies and combined with mild hypertension. The

doctors really didn't think anything of it because it didn't

progress. Then I went back to my original family doctor early this

year, who said I had hypertension and thus the battery of tests

ensued culminating with the biopsy.

I am really very scared about what this means for me long term and

well short term too. For example should I plan to see a nutrionist

and find out what I can or should change in my diet? I went on

Atkins last year and lost 40lbs, began to run 4x per week and felt

actually pretty good. But the literature I have read now says that

Atkins is not a good diet for people with kidney disease. I would

still like to lose another 15lbs and continue with my excercise

routine...of which I reduced because of fatigue. Meanwhile I am also

testing my pacemaker because the battery and model may need

replacing in the near future. I am worried about my kids and

ensuring that I am as healthy as possible to look after them

properly. My husband is older than I by 12 years and has Type I

diabetes and I have been the primary financial provider and he has

stayed home to care for our children. I always assumed his health

issues would be our biggest concern, and then our son's and I

convinced myself that I was invincible...smile.

Now you all know a little more about me and my situation. I look

forward to getting to know you all and learning from your valuable

experiences. Thank you for listening. I promise to be less wordy in

the future. S

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Thank you

[Guest guest]

Hi Cristy,

First, please let me extend a warm welcome to you. I am sorry you have been

diagnosed with IgAN, but glad you found your way here.

There is an article on the question of IgAN being hereditary or not on our

sister site, www.igan.ca. Pierre, who also founded this site has put up so much

information presented from a patient's perspective there that may answer many

of your initial questions.

Diabetes is one of the primary causes of kidney failure, but is in no way

related to IgAN. No one knows for sure what triggers IgAN unfortunately. It is

true that medicine is making significant strides, and hopefully one day there

will be a cure for IgAN, but in the mean time, there are treatments that can

help prolong the life of your kidneys, and dialysis and/or transplant to take

care of you if you are in the minority of those with IgAN whose kidneys reach

that point. Only somewhere between 30-50% of patients with IgAN do reach end

stage, and hopefully you are in the group that does not.

Please feel free to ask any questions, and know we are here to support you.