Re: 2 QUESTIONS FOR PIERRE ABOUT TREATMENT

[Guest guest]

PASCAL,,,,,,,HI MY DAUGHTER IS 10 YEARS OLD HAS IGAN,,,AND SHE HAS BEEN ON

PREDNISONE FOR 4 MONTHS NOW,,,,AND WE ARE IN THE UNITED STATES,,,,,BUT SHE IS

ALOS ON 7 OTHER MEDS TOO,,,,AND I COULD NOT TELL YOU WHICH ONE IS BRINGING HER

BLOOD WORK DOWN AND HER URINE TEST,,,BUT ALL OF HER TESTS HAS BEEN COMING BACK

SO GOOD NOW,,,,,,FEEL FREE TO EMAIL ME AT ANYTIME WITH ANY QUESTIONS,,,I WILL

TRY TO ANSWER THEM THE BEST I CAN,,,,,BUT I WOULD TELL ME DR JUST TO LET YOU

TRY IT FOR 4 OR 5 MONTHS AND SEE HOW IT REACTS WITH YOU,,,,,,,,BYE FOR

NOW,,,CRYSTAL

[Guest guest]

Hi Pascal,

I am glad to hear from you again. Let me try to answer your questions.

Your first question was about Prednisone or other drugs. I know we have some

members who have had good results with Prednisone and other drugs. You find

even here in the United States differing opinions about the use of other

drugs. I think it is more likely that a doctor would prescribe Prednisone or

other

drugs if your kidney function is declining, rather than if it is stable. We

have a number of members around the 3.0 mark who are just on Ace inhibitors

and fish oil as your treatment currently is. It doesn't hurt to discuss your

options with your doctor, but the decision really has to rest with your doctor

because that is the only one familiar with all your history.

Your second question was on the impact on mental health reading all the posts

of the members. I think this is a highly personal decision. For me, I feel

that information brings power, and for me knowing is better than the unknown.

I feel personally that seeing Pierre, Marty, , Derrick and others

successfully go through transitioning to dialysis and/or transplant it takes so

much

of the anxiety away for me. Their success brings me comfort and takes away

anxiety, but again it is a highly personal decision.

Please let us know what your doctors and you decide at your appointments

later this month.

[Guest guest]

---

Dear Pascal

I am sorry but I am not able to answer most of your questions BUT I

am sure that Pierre or some of our great modarators will help you

soon. ( differnet time zones

Re: 2 B

It's very individual, but in my case I am really very happy that I

have found this wonderful group. I was feeling " depressed " and

even nervous that my knowledge about IGAN was so little...so I was

terribly seeking for information...

I am just more aware now what the future could bring ...

For me ...the more knowledge - the better.

Re: low antigenic diet

the list of products that are allowed and forbidden was given to me

by my neph in the hospital..

You can still eat pasta and bread - but it must be gluten free one !

It's possible to buy such products here in Poland where I live( but

of course they are much more expensive that the normal once) , so it

should be not a problem in France

.....but I am not sure if such a diet has any good benefits if the

IGAN is more advanced ...( but I could ask my neph during the next

visit if you wish )

Cheers,

Elvira

In iga-nephropathy , " este " <p.este@f...> wrote:

> hello Pierre and all users's igA group ,

>

> I'm french and 35 years old .

> I have only one right kidney.

> in 1989 , disorders appear with blood and proteinuria in my test

urine.

> in 1993 , Hyper tension

> in 1995 , biopsy by lombotomia because kidney alone ( no risks).

> now 2003, my creatinine is 2.7 before 1 year and clearance 35 %.

> i try for 3 months an hard low antigenic diet in a french book from

a doctor

> called DR SEIGNALET " food or third medecine "

> he said principally no bread , no milk , no beer , no pasta

> etc he want restaure the primitive food way.

>

> A/ my main question is before meeting my neph in an associative

forum on

> genetic renal dieseases called AIRG

> on 21 and 22 june 2003:

>

> in FRANCE , most of nephs don't give prenisone on igA patients

>

> do you think i must now write him a letter to ask for the interest

of this

> drug for me ?

>

> he said me two times if you have been japanese patient , you will

take

> predisone for example ? but not in france.

>

> it's seem to exist two schools of thinking in therapeutic

management:

>

> 1/ ACE( Renitec 10 mg ) + ALLOPURINOL ( Zyloric 100 mg ) + FISH

OIL ( 8

> g/day) my treatment since 6 years

>

> 2/ prenisone and others drugs

>

> thanks very much for yours responses.

> I'm very happy to meet this place to broke isolation.

>

> B/ the last question , read all posts of the igA group is very

interesting

> but so hard sometimes

> Do you think for the health mental et serenity is better to know or

not ,

> all details of your ill evolution reading and compare with the

others

> stories ?

>

> friendly .

>

> PASCAL

[Guest guest]

hi elvira ,

we live in the old europe.

nice to meet you .

i'm very happy for your quickly response.

now , give more time to understand and know the gluten free diet.

french nephs don't think that food diet can change your ill evolution.

i want try all is possible and believe in my luck and you help youself

becauuse medecine can not cure igA.

friendly

pascal

Re: 2 QUESTIONS FOR PIERRE ABOUT TREATMENT

> ---

> Dear Pascal

>

> I am sorry but I am not able to answer most of your questions BUT I

> am sure that Pierre or some of our great modarators will help you

> soon. ( differnet time zones

> Re: 2 B

>

> It's very individual, but in my case I am really very happy that I

> have found this wonderful group. I was feeling " depressed " and

> even nervous that my knowledge about IGAN was so little...so I was

> terribly seeking for information...

> I am just more aware now what the future could bring ...

> For me ...the more knowledge - the better.

>

> Re: low antigenic diet

>

> the list of products that are allowed and forbidden was given to me

> by my neph in the hospital..

> You can still eat pasta and bread - but it must be gluten free one !

> It's possible to buy such products here in Poland where I live( but

> of course they are much more expensive that the normal once) , so it

> should be not a problem in France

> ....but I am not sure if such a diet has any good benefits if the

> IGAN is more advanced ...( but I could ask my neph during the next

> visit if you wish )

>

> Cheers,

> Elvira

>

> In iga-nephropathy , " este " <p.este@f...> wrote:

> > hello Pierre and all users's igA group ,

> >

> > I'm french and 35 years old .

> > I have only one right kidney.

> > in 1989 , disorders appear with blood and proteinuria in my test

> urine.

> > in 1993 , Hyper tension

> > in 1995 , biopsy by lombotomia because kidney alone ( no risks).

> > now 2003, my creatinine is 2.7 before 1 year and clearance 35 %.

> > i try for 3 months an hard low antigenic diet in a french book from

> a doctor

> > called DR SEIGNALET " food or third medecine "

> > he said principally no bread , no milk , no beer , no pasta

> > etc he want restaure the primitive food way.

> >

> > A/ my main question is before meeting my neph in an associative

> forum on

> > genetic renal dieseases called AIRG

> > on 21 and 22 june 2003:

> >

> > in FRANCE , most of nephs don't give prenisone on igA patients

> >

> > do you think i must now write him a letter to ask for the interest

> of this

> > drug for me ?

> >

> > he said me two times if you have been japanese patient , you will

> take

> > predisone for example ? but not in france.

> >

> > it's seem to exist two schools of thinking in therapeutic

> management:

> >

> > 1/ ACE( Renitec 10 mg ) + ALLOPURINOL ( Zyloric 100 mg ) + FISH

> OIL ( 8

> > g/day) my treatment since 6 years

> >

> > 2/ prenisone and others drugs

> >

> > thanks very much for yours responses.

> > I'm very happy to meet this place to broke isolation.

> >

> > B/ the last question , read all posts of the igA group is very

> interesting

> > but so hard sometimes

> > Do you think for the health mental et serenity is better to know or

> not ,

> > all details of your ill evolution reading and compare with the

> others

> > stories ?

> >

> > friendly .

> >

> > PASCAL

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

> 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]

hi crystal ,

thanks very much for your quickly response.

i would give more informations on my question later.

friendly

can explain me the meaning of " lol " ?

pascal

Re: 2 QUESTIONS FOR PIERRE ABOUT TREATMENT

> PASCAL,,,,,,,HI MY DAUGHTER IS 10 YEARS OLD HAS IGAN,,,AND SHE HAS BEEN ON

> PREDNISONE FOR 4 MONTHS NOW,,,,AND WE ARE IN THE UNITED STATES,,,,,BUT SHE

IS

> ALOS ON 7 OTHER MEDS TOO,,,,AND I COULD NOT TELL YOU WHICH ONE IS BRINGING

HER

> BLOOD WORK DOWN AND HER URINE TEST,,,BUT ALL OF HER TESTS HAS BEEN COMING

BACK

> SO GOOD NOW,,,,,,FEEL FREE TO EMAIL ME AT ANYTIME WITH ANY QUESTIONS,,,I

WILL

> TRY TO ANSWER THEM THE BEST I CAN,,,,,BUT I WOULD TELL ME DR JUST TO LET

YOU

> TRY IT FOR 4 OR 5 MONTHS AND SEE HOW IT REACTS WITH YOU,,,,,,,,BYE FOR

> NOW,,,CRYSTAL

>

>

>

[Guest guest]

Hi Pascal,

I will answer for Crystal that LOL means laugh out loud :-)

[Guest guest]

THANKS LAURA

[Guest guest]

---Hi Pascal

The group members who live in Europe are definitly the minority here,

so I am always glad (?)( not a good word, I wish you don't have

IGAN...) to welcome here new members from my corner of the world

But don't worry Pascal, the group is very friendly, no matter where

you live ...

This diet was prescribed to me by my neph. If you have any

questions ...and I will be able to answer them please ask.

Hugs,

Elvira

In iga-nephropathy , " este " <p.este@f...> wrote:

> hi elvira ,

>

> we live in the old europe.

> nice to meet you .

> i'm very happy for your quickly response.

> now , give more time to understand and know the gluten free diet.

> french nephs don't think that food diet can change your ill

evolution.

> i want try all is possible and believe in my luck and you help

youself

> becauuse medecine can not cure igA.

>

> friendly

>

> pascal

> Re: 2 QUESTIONS FOR PIERRE ABOUT TREATMENT

>

>

> > ---

> > Dear Pascal

> >

> > I am sorry but I am not able to answer most of your questions BUT

I

> > am sure that Pierre or some of our great modarators will help you

> > soon. ( differnet time zones

> > Re: 2 B

> >

> > It's very individual, but in my case I am really very happy that I

> > have found this wonderful group. I was feeling " depressed " and

> > even nervous that my knowledge about IGAN was so little...so I

was

> > terribly seeking for information...

> > I am just more aware now what the future could bring ...

> > For me ...the more knowledge - the better.

> >

> > Re: low antigenic diet

> >

> > the list of products that are allowed and forbidden was given to

me

> > by my neph in the hospital..

> > You can still eat pasta and bread - but it must be gluten free

one !

> > It's possible to buy such products here in Poland where I live(

but

> > of course they are much more expensive that the normal once) , so

it

> > should be not a problem in France

> > ....but I am not sure if such a diet has any good benefits if the

> > IGAN is more advanced ...( but I could ask my neph during the next

> > visit if you wish )

> >

> > Cheers,

> > Elvira

> >

> > In iga-nephropathy , " este " <p.este@f...> wrote:

> > > hello Pierre and all users's igA group ,

> > >

> > > I'm french and 35 years old .

> > > I have only one right kidney.

> > > in 1989 , disorders appear with blood and proteinuria in my test

> > urine.

> > > in 1993 , Hyper tension

> > > in 1995 , biopsy by lombotomia because kidney alone ( no risks).

> > > now 2003, my creatinine is 2.7 before 1 year and clearance 35 %.

> > > i try for 3 months an hard low antigenic diet in a french book

from

> > a doctor

> > > called DR SEIGNALET " food or third medecine "

> > > he said principally no bread , no milk , no beer , no pasta

> > > etc he want restaure the primitive food way.

> > >

> > > A/ my main question is before meeting my neph in an associative

> > forum on

> > > genetic renal dieseases called AIRG

> > > on 21 and 22 june 2003:

> > >

> > > in FRANCE , most of nephs don't give prenisone on igA patients

> > >

> > > do you think i must now write him a letter to ask for the

interest

> > of this

> > > drug for me ?

> > >

> > > he said me two times if you have been japanese patient , you

will

> > take

> > > predisone for example ? but not in france.

> > >

> > > it's seem to exist two schools of thinking in therapeutic

> > management:

> > >

> > > 1/ ACE( Renitec 10 mg ) + ALLOPURINOL ( Zyloric 100 mg ) + FISH

> > OIL ( 8

> > > g/day) my treatment since 6 years

> > >

> > > 2/ prenisone and others drugs

> > >

> > > thanks very much for yours responses.

> > > I'm very happy to meet this place to broke isolation.

> > >

> > > B/ the last question , read all posts of the igA group is very

> > interesting

> > > but so hard sometimes

> > > Do you think for the health mental et serenity is better to

know or

> > not ,

> > > all details of your ill evolution reading and compare with the

> > others

> > > stories ?

> > >

> > > friendly .

> > >

> > > PASCAL

> >

> >

> >

> > To edit your settings for the group, go to our Yahoo Group

> > home page:

> > http://groups.yahoo.com/group/iga-nephropathy/

> > 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]

Hi Pascal,

I am very glad you asked about LOL. It means several things - laughing out

loud, lots of love, lots of luck. However, my hunch is that it may be used

to mean other things as well, because I don't always understand what it

means in context! I hope someone here can provide additional decoding!

Cy

Re: 2 QUESTIONS FOR PIERRE ABOUT TREATMENT

>

>

> > PASCAL,,,,,,,HI MY DAUGHTER IS 10 YEARS OLD HAS IGAN,,,AND SHE HAS BEEN

ON

> > PREDNISONE FOR 4 MONTHS NOW,,,,AND WE ARE IN THE UNITED STATES,,,,,BUT

SHE

> IS

> > ALOS ON 7 OTHER MEDS TOO,,,,AND I COULD NOT TELL YOU WHICH ONE IS

BRINGING

> HER

> > BLOOD WORK DOWN AND HER URINE TEST,,,BUT ALL OF HER TESTS HAS BEEN

COMING

> BACK

> > SO GOOD NOW,,,,,,FEEL FREE TO EMAIL ME AT ANYTIME WITH ANY QUESTIONS,,,I

> WILL

> > TRY TO ANSWER THEM THE BEST I CAN,,,,,BUT I WOULD TELL ME DR JUST TO LET

> YOU

> > TRY IT FOR 4 OR 5 MONTHS AND SEE HOW IT REACTS WITH YOU,,,,,,,,BYE FOR

> > NOW,,,CRYSTAL

> >

> >

> >

[Guest guest]

,

I never heard of the lots of love before, but I like that even better! And

this group IS so sweet

[Guest guest]

Oh, dumb me! I thought it ment lots of love!! Oh, well, I thought all of you

were being so sweet. :-)

Re: 2 QUESTIONS FOR PIERRE ABOUT TREATMENT

Hi Pascal,

I will answer for Crystal that LOL means laugh out loud :-)

[Guest guest]

Bonjour Pascal

There are some new articles about IgAN which might be of interest. The links

to them are on the News page of www.igan.ca

There is little to show that lowering mild-to-moderate proteinuria with

drugs does anything to slow the long-term progression of IgAN.

About your last question, concerning mental serenity...

I think it depends on the individual. Some are less stressed by knowing all

the facts all the time, while others may become obsessed with it. Being

obsessed with anything probably isn't a good thing.

Pierre

2 QUESTIONS FOR PIERRE ABOUT TREATMENT

> hello Pierre and all users's igA group ,

>

> I'm french and 35 years old .

> I have only one right kidney.

> in 1989 , disorders appear with blood and proteinuria in my test urine.

> in 1993 , Hyper tension

> in 1995 , biopsy by lombotomia because kidney alone ( no risks).

> now 2003, my creatinine is 2.7 before 1 year and clearance 35 %.

> i try for 3 months an hard low antigenic diet in a french book from a

doctor

> called DR SEIGNALET " food or third medecine "

> he said principally no bread , no milk , no beer , no pasta

> etc he want restaure the primitive food way.

>

> A/ my main question is before meeting my neph in an associative forum on

> genetic renal dieseases called AIRG

> on 21 and 22 june 2003:

>

> in FRANCE , most of nephs don't give prenisone on igA patients

>

> do you think i must now write him a letter to ask for the interest of this

> drug for me ?

>

> he said me two times if you have been japanese patient , you will take

> predisone for example ? but not in france.

>

> it's seem to exist two schools of thinking in therapeutic management:

>

> 1/ ACE( Renitec 10 mg ) + ALLOPURINOL ( Zyloric 100 mg ) + FISH OIL ( 8

> g/day) my treatment since 6 years

>

> 2/ prenisone and others drugs

>

> thanks very much for yours responses.

> I'm very happy to meet this place to broke isolation.

>

> B/ the last question , read all posts of the igA group is very interesting

> but so hard sometimes

> Do you think for the health mental et serenity is better to know or not ,

> all details of your ill evolution reading and compare with the others

> stories ?

>

> friendly .

>

> PASCAL

>