Re: They're taking me off the Prednisone

[Guest guest]

I was looking at my chest and sholders the other day and saw a little

bit of acne. Thought I was going backwards for a moment. My face

has been breaking out since this last flare up and I just blamed the

stress, but I think I'll blame the prednisone now.

BRANDY

> > > > Last night at 9:30 my neph called, my labs are worse and my

BP

> is

> > > out

> > > > of control. My creatinine is 4.4, my cholesterol is 280, and

> he

> > > says

> > > > my calcium is low, I don't know how, I drink a gallon of milk

a

> > > day.

> > > > I started taking 2 prednisone instead of 4 today, and in 2

> weeks

> > > I'll

> > > > cut down to 1. I can't get my BP below 120 and yesterday the

> doc

> > > was

> > > > going to check me in the hospital so we could control it but

I

> was

> > > > home alone with my son and EVERYONE was working, had no ride

or

> > > > sitter. So he called me in another BP script and I take one

of

> > > them

> > > > 3 times a day on top of still wearing my patch.

> > > >

> > > > I am still fighting off a head cold. I have no fever but my

> head

> > > is

> > > > soooo stuffed-up on top of the high BP headache. My pain meds

> > > have

> > > > been changed from Vicodine to Darvacet and they KICK MY

BUTT.

> I

> > > had

> > > > to take a half of one earlier cause I had my 7 month old

nephew

> > > here

> > > > and it still knocked me out. I want a magic pill that will

> take

> > > away

> > > > the pain without the drugged up feeling, I also hate that

> hungover

> > > > feeling after I come out of it.

> > > >

> > > > The begining of this year my creatinine was 2.4, at the rate

> I'm

> > > > going, I'm looking at dyalisis by Halloween. Gotta run.

> > > >

> > > > BRANDY

> > >

> > >

> > >

> > >

> > > 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]

I was looking at my chest and sholders the other day and saw a little

bit of acne. Thought I was going backwards for a moment. My face

has been breaking out since this last flare up and I just blamed the

stress, but I think I'll blame the prednisone now.

BRANDY

> > > > Last night at 9:30 my neph called, my labs are worse and my

BP

> is

> > > out

> > > > of control. My creatinine is 4.4, my cholesterol is 280, and

> he

> > > says

> > > > my calcium is low, I don't know how, I drink a gallon of milk

a

> > > day.

> > > > I started taking 2 prednisone instead of 4 today, and in 2

> weeks

> > > I'll

> > > > cut down to 1. I can't get my BP below 120 and yesterday the

> doc

> > > was

> > > > going to check me in the hospital so we could control it but

I

> was

> > > > home alone with my son and EVERYONE was working, had no ride

or

> > > > sitter. So he called me in another BP script and I take one

of

> > > them

> > > > 3 times a day on top of still wearing my patch.

> > > >

> > > > I am still fighting off a head cold. I have no fever but my

> head

> > > is

> > > > soooo stuffed-up on top of the high BP headache. My pain meds

> > > have

> > > > been changed from Vicodine to Darvacet and they KICK MY

BUTT.

> I

> > > had

> > > > to take a half of one earlier cause I had my 7 month old

nephew

> > > here

> > > > and it still knocked me out. I want a magic pill that will

> take

> > > away

> > > > the pain without the drugged up feeling, I also hate that

> hungover

> > > > feeling after I come out of it.

> > > >

> > > > The begining of this year my creatinine was 2.4, at the rate

> I'm

> > > > going, I'm looking at dyalisis by Halloween. Gotta run.

> > > >

> > > > BRANDY

> > >

> > >

> > >

> > >

> > > 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]

> The irony of all this is that I've come into my second teenager

> years: I've got a bit of acne. oh yay. ; )

>

> Sophia

Yes Prednisone causes a special type of acne, it is one of the side effects

my neph warned me about. I've never had acne like this in my life, even as

a teen! It hurts, nothing clears it up, and for me it only seems to form on

my cheekbones (or at least where my cheekbones would be if you could see

them) and on my chin/around my mouth. It goes lovely with the constant

flushed face look. ;o)

Amy

[Guest guest]

> The irony of all this is that I've come into my second teenager

> years: I've got a bit of acne. oh yay. ; )

>

> Sophia

Yes Prednisone causes a special type of acne, it is one of the side effects

my neph warned me about. I've never had acne like this in my life, even as

a teen! It hurts, nothing clears it up, and for me it only seems to form on

my cheekbones (or at least where my cheekbones would be if you could see

them) and on my chin/around my mouth. It goes lovely with the constant

flushed face look. ;o)

Amy

[Guest guest]

> The irony of all this is that I've come into my second teenager

> years: I've got a bit of acne. oh yay. ; )

>

> Sophia

Yes Prednisone causes a special type of acne, it is one of the side effects

my neph warned me about. I've never had acne like this in my life, even as

a teen! It hurts, nothing clears it up, and for me it only seems to form on

my cheekbones (or at least where my cheekbones would be if you could see

them) and on my chin/around my mouth. It goes lovely with the constant

flushed face look. ;o)

Amy

[Guest guest]

Hi ,

Acne is a common side effect of Prednisone unfortunately.

[Guest guest]

Hi ,

Acne is a common side effect of Prednisone unfortunately.

[Guest guest]

Hi ,

Acne is a common side effect of Prednisone unfortunately.

[Guest guest]

Hey Amy,

I don't think I've ever had it this bad when I was a teen either,

but mine's did hit the T-zone....as it used to. *sigh*

Sophia

> > The irony of all this is that I've come into my second teenager

> > years: I've got a bit of acne. oh yay. ; )

> >

> > Sophia

>

> Yes Prednisone causes a special type of acne, it is one of the

side effects

> my neph warned me about. I've never had acne like this in my

life, even as

> a teen! It hurts, nothing clears it up, and for me it only seems

to form on

> my cheekbones (or at least where my cheekbones would be if you

could see

> them) and on my chin/around my mouth. It goes lovely with the

constant

> flushed face look. ;o)

>

> Amy

[Guest guest]

Hey Amy,

I don't think I've ever had it this bad when I was a teen either,

but mine's did hit the T-zone....as it used to. *sigh*

Sophia

> > The irony of all this is that I've come into my second teenager

> > years: I've got a bit of acne. oh yay. ; )

> >

> > Sophia

>

> Yes Prednisone causes a special type of acne, it is one of the

side effects

> my neph warned me about. I've never had acne like this in my

life, even as

> a teen! It hurts, nothing clears it up, and for me it only seems

to form on

> my cheekbones (or at least where my cheekbones would be if you

could see

> them) and on my chin/around my mouth. It goes lovely with the

constant

> flushed face look. ;o)

>

> Amy

[Guest guest]

Hey Amy,

I don't think I've ever had it this bad when I was a teen either,

but mine's did hit the T-zone....as it used to. *sigh*

Sophia

> > The irony of all this is that I've come into my second teenager

> > years: I've got a bit of acne. oh yay. ; )

> >

> > Sophia

>

> Yes Prednisone causes a special type of acne, it is one of the

side effects

> my neph warned me about. I've never had acne like this in my

life, even as

> a teen! It hurts, nothing clears it up, and for me it only seems

to form on

> my cheekbones (or at least where my cheekbones would be if you

could see

> them) and on my chin/around my mouth. It goes lovely with the

constant

> flushed face look. ;o)

>

> Amy

[Guest guest]

Hi ,

My doctor also has indicated to me that I am beyond the help of Prednisone,

but I am near 20% function right now. I think there is a point at which the

side effects of Prednisone outweigh the possible benefits. I don't know if you

are there or not, but certainly it is a good discussion to have with your Neph

next week.

I am very glad you seem close to getting the approval to begin your Epo

injections. They will help your energy level, but it does take 3-6 weeks for

the

impact to be felt. I hope you can begin next Tuesday. On the HMO, it is

terrible when insurance companies have more to say over your treatment than the

doctor does. I really hope you don't have to change doctors. Perhaps your Neph

will be a participant in your new medical plan. Even though you would need a

new primary physician, I hope you can keep your Nephrologist at least. Sorry

you have to go through that pain, but I think it is worth it to get out of

your old job and all that unnecessary stress.

On your reply to JPVictor, , there is no apology necessary. This forum

is a safe place where we can share ALL our feelings, even when we are scared

and yes, even when we are feeling a little sorry for ourselves. It happens to

all of us from time to time. There was nothing inappropriate in your response

at all.

Please let us know what your Neph says on Tuesday, and I am praying that you

stayed at 35%.

In a message dated 4/23/2004 6:11:34 PM Pacific Daylight Time,

leslielist@... writes:

> You all are talking about being on Prednisone off and

> on. My doctor has ruled out prednisone for now, something about the

> " aggressive "

[Guest guest]

Hi ,

My doctor also has indicated to me that I am beyond the help of Prednisone,

but I am near 20% function right now. I think there is a point at which the

side effects of Prednisone outweigh the possible benefits. I don't know if you

are there or not, but certainly it is a good discussion to have with your Neph

next week.

I am very glad you seem close to getting the approval to begin your Epo

injections. They will help your energy level, but it does take 3-6 weeks for

the

impact to be felt. I hope you can begin next Tuesday. On the HMO, it is

terrible when insurance companies have more to say over your treatment than the

doctor does. I really hope you don't have to change doctors. Perhaps your Neph

will be a participant in your new medical plan. Even though you would need a

new primary physician, I hope you can keep your Nephrologist at least. Sorry

you have to go through that pain, but I think it is worth it to get out of

your old job and all that unnecessary stress.

On your reply to JPVictor, , there is no apology necessary. This forum

is a safe place where we can share ALL our feelings, even when we are scared

and yes, even when we are feeling a little sorry for ourselves. It happens to

all of us from time to time. There was nothing inappropriate in your response

at all.

Please let us know what your Neph says on Tuesday, and I am praying that you

stayed at 35%.

In a message dated 4/23/2004 6:11:34 PM Pacific Daylight Time,

leslielist@... writes:

> You all are talking about being on Prednisone off and

> on. My doctor has ruled out prednisone for now, something about the

> " aggressive "

[Guest guest]

Hi ,

My doctor also has indicated to me that I am beyond the help of Prednisone,

but I am near 20% function right now. I think there is a point at which the

side effects of Prednisone outweigh the possible benefits. I don't know if you

are there or not, but certainly it is a good discussion to have with your Neph

next week.

I am very glad you seem close to getting the approval to begin your Epo

injections. They will help your energy level, but it does take 3-6 weeks for

the

impact to be felt. I hope you can begin next Tuesday. On the HMO, it is

terrible when insurance companies have more to say over your treatment than the

doctor does. I really hope you don't have to change doctors. Perhaps your Neph

will be a participant in your new medical plan. Even though you would need a

new primary physician, I hope you can keep your Nephrologist at least. Sorry

you have to go through that pain, but I think it is worth it to get out of

your old job and all that unnecessary stress.

On your reply to JPVictor, , there is no apology necessary. This forum

is a safe place where we can share ALL our feelings, even when we are scared

and yes, even when we are feeling a little sorry for ourselves. It happens to

all of us from time to time. There was nothing inappropriate in your response

at all.

Please let us know what your Neph says on Tuesday, and I am praying that you

stayed at 35%.

In a message dated 4/23/2004 6:11:34 PM Pacific Daylight Time,

leslielist@... writes:

> You all are talking about being on Prednisone off and

> on. My doctor has ruled out prednisone for now, something about the

> " aggressive "

[Guest guest]

Amy, did I read you right. Did your function go UP from 35% to 45% with

treatment? If so, that is a tremendous encouragement to me, because I just

assumed the best I can do is hang on to what I've got. Another question to

whoever might know: You all are talking about being on Prednisone off and

on. My doctor has ruled out prednisone for now, something about the

" aggressive " part of my disease is over with and it wouldn't do me any good.

So many of you are on it that I'm wondering if he is just being conservative

or if maybe it's just to soon to tell. I've really only seen him 5 weeks

after the biopsy and not due again til next week. I am really chomping at

the bit to go next week. I am counting the days, and it is driving me

crazy. I'm just so anxious to see what my labs are. I have been having

more foam in my urine, so I'm thinking I'm spilling more protein.

I have started my new job, I think it's gonna be just fine. I

am anxious to finish orientation so I can head out on my own and make my own

schedule. I had had a suspicion that I would be really worn out the first

2-3 weeks cause I'd gotten used to being lazy, and accustomed to resting

when I got tired. I was right. It is only Friday evening and I am worn

out. And I only started on Wednesday and have really only seen a handful of

patients. I think I am gonna love the autonomy of this job. I have

volunteered to help out with a few visits this weekend-I need the money.

About the Aranesp shots, , I have been pestering and

pestering the insurance company for them to give us an answer-Ihad told them

I was gonna call every day til I got an answer-they have not officially said

yes, but the customer service lady said the director had written comment

about his review that said he agreed the shots were medically necessary.

They just have to send an official letter to me and the doctor's office. I

hope they do that by next Tues., so i can go ahead and get the shot. The

only bad thing is, now that they have said yes, I am changing insurance to

my new job's insurance (which sucks, by the way-I HATE HMO's) and I'm afraid

I'll have to go though all that mess again. Right now, I've got COBRA

coverage til the end of May. I plan to talk to DR. Oliver to see what he

says about my old and new insurance, and if he says it's gonna be like

pulling teeth to get me what I need with the new insurance, I may just pay

the price and keep my old insurance under COBRA for as long as I can. With

this HMO, I would have to find a new primary doctor-none of the doctors on

their list have I ever met before. The " primary " doctor would have to refer

to any specialists-including my nephrologists and the insurance company

would decide how many visits I would get to have with him for the next year.

It seems ridiculous to me to have to go as a completely strange doctor for

" permission " to see a doctor that I've already been seeing and who I really

NEED to see. It drives me crazy.

Last, but not least, I want to apologize for my pessimism to JPVictor and

anyone else who has read my pessimistic replies. Sometimes I really don't

know what gets into me. I know some of it is just because I'm scared, and

probably feeling sorry for myself, but that's no excuse. So I am sorry. I

am hoping my next lab results will prove the doctor wrong and that I will

hold at 35% and not have to start dialysis for several more years. As I

said earlier, I'm hoping the 5 week post-biopsy visit was really too soon to

tell anything definitively. Anyway, God Bless you all and thank you for

your kindness and compassion toward us " newbies. " You are an inspiration.

_____

* of Yahoo! Groups is subject to the Yahoo! Terms of

<http://docs.yahoo.com/info/terms/> Service.

[Guest guest]

Amy, did I read you right. Did your function go UP from 35% to 45% with

treatment? If so, that is a tremendous encouragement to me, because I just

assumed the best I can do is hang on to what I've got. Another question to

whoever might know: You all are talking about being on Prednisone off and

on. My doctor has ruled out prednisone for now, something about the

" aggressive " part of my disease is over with and it wouldn't do me any good.

So many of you are on it that I'm wondering if he is just being conservative

or if maybe it's just to soon to tell. I've really only seen him 5 weeks

after the biopsy and not due again til next week. I am really chomping at

the bit to go next week. I am counting the days, and it is driving me

crazy. I'm just so anxious to see what my labs are. I have been having

more foam in my urine, so I'm thinking I'm spilling more protein.

I have started my new job, I think it's gonna be just fine. I

am anxious to finish orientation so I can head out on my own and make my own

schedule. I had had a suspicion that I would be really worn out the first

2-3 weeks cause I'd gotten used to being lazy, and accustomed to resting

when I got tired. I was right. It is only Friday evening and I am worn

out. And I only started on Wednesday and have really only seen a handful of

patients. I think I am gonna love the autonomy of this job. I have

volunteered to help out with a few visits this weekend-I need the money.

About the Aranesp shots, , I have been pestering and

pestering the insurance company for them to give us an answer-Ihad told them

I was gonna call every day til I got an answer-they have not officially said

yes, but the customer service lady said the director had written comment

about his review that said he agreed the shots were medically necessary.

They just have to send an official letter to me and the doctor's office. I

hope they do that by next Tues., so i can go ahead and get the shot. The

only bad thing is, now that they have said yes, I am changing insurance to

my new job's insurance (which sucks, by the way-I HATE HMO's) and I'm afraid

I'll have to go though all that mess again. Right now, I've got COBRA

coverage til the end of May. I plan to talk to DR. Oliver to see what he

says about my old and new insurance, and if he says it's gonna be like

pulling teeth to get me what I need with the new insurance, I may just pay

the price and keep my old insurance under COBRA for as long as I can. With

this HMO, I would have to find a new primary doctor-none of the doctors on

their list have I ever met before. The " primary " doctor would have to refer

to any specialists-including my nephrologists and the insurance company

would decide how many visits I would get to have with him for the next year.

It seems ridiculous to me to have to go as a completely strange doctor for

" permission " to see a doctor that I've already been seeing and who I really

NEED to see. It drives me crazy.

Last, but not least, I want to apologize for my pessimism to JPVictor and

anyone else who has read my pessimistic replies. Sometimes I really don't

know what gets into me. I know some of it is just because I'm scared, and

probably feeling sorry for myself, but that's no excuse. So I am sorry. I

am hoping my next lab results will prove the doctor wrong and that I will

hold at 35% and not have to start dialysis for several more years. As I

said earlier, I'm hoping the 5 week post-biopsy visit was really too soon to

tell anything definitively. Anyway, God Bless you all and thank you for

your kindness and compassion toward us " newbies. " You are an inspiration.

_____

* of Yahoo! Groups is subject to the Yahoo! Terms of

<http://docs.yahoo.com/info/terms/> Service.

[Guest guest]

Amy, did I read you right. Did your function go UP from 35% to 45% with

treatment? If so, that is a tremendous encouragement to me, because I just

assumed the best I can do is hang on to what I've got. Another question to

whoever might know: You all are talking about being on Prednisone off and

on. My doctor has ruled out prednisone for now, something about the

" aggressive " part of my disease is over with and it wouldn't do me any good.

So many of you are on it that I'm wondering if he is just being conservative

or if maybe it's just to soon to tell. I've really only seen him 5 weeks

after the biopsy and not due again til next week. I am really chomping at

the bit to go next week. I am counting the days, and it is driving me

crazy. I'm just so anxious to see what my labs are. I have been having

more foam in my urine, so I'm thinking I'm spilling more protein.

I have started my new job, I think it's gonna be just fine. I

am anxious to finish orientation so I can head out on my own and make my own

schedule. I had had a suspicion that I would be really worn out the first

2-3 weeks cause I'd gotten used to being lazy, and accustomed to resting

when I got tired. I was right. It is only Friday evening and I am worn

out. And I only started on Wednesday and have really only seen a handful of

patients. I think I am gonna love the autonomy of this job. I have

volunteered to help out with a few visits this weekend-I need the money.

About the Aranesp shots, , I have been pestering and

pestering the insurance company for them to give us an answer-Ihad told them

I was gonna call every day til I got an answer-they have not officially said

yes, but the customer service lady said the director had written comment

about his review that said he agreed the shots were medically necessary.

They just have to send an official letter to me and the doctor's office. I

hope they do that by next Tues., so i can go ahead and get the shot. The

only bad thing is, now that they have said yes, I am changing insurance to

my new job's insurance (which sucks, by the way-I HATE HMO's) and I'm afraid

I'll have to go though all that mess again. Right now, I've got COBRA

coverage til the end of May. I plan to talk to DR. Oliver to see what he

says about my old and new insurance, and if he says it's gonna be like

pulling teeth to get me what I need with the new insurance, I may just pay

the price and keep my old insurance under COBRA for as long as I can. With

this HMO, I would have to find a new primary doctor-none of the doctors on

their list have I ever met before. The " primary " doctor would have to refer

to any specialists-including my nephrologists and the insurance company

would decide how many visits I would get to have with him for the next year.

It seems ridiculous to me to have to go as a completely strange doctor for

" permission " to see a doctor that I've already been seeing and who I really

NEED to see. It drives me crazy.

Last, but not least, I want to apologize for my pessimism to JPVictor and

anyone else who has read my pessimistic replies. Sometimes I really don't

know what gets into me. I know some of it is just because I'm scared, and

probably feeling sorry for myself, but that's no excuse. So I am sorry. I

am hoping my next lab results will prove the doctor wrong and that I will

hold at 35% and not have to start dialysis for several more years. As I

said earlier, I'm hoping the 5 week post-biopsy visit was really too soon to

tell anything definitively. Anyway, God Bless you all and thank you for

your kindness and compassion toward us " newbies. " You are an inspiration.

_____

* of Yahoo! Groups is subject to the Yahoo! Terms of

<http://docs.yahoo.com/info/terms/> Service.

[Guest guest]

Hey ,

Yep I did see an increase in % function after starting the prednisone.

In my case the theory goes like this....I was in the midst of a very

aggressive part of the disease at dx, they started me with aggressive tx

right off the bat (high doses of prednisone and ACE inhibitors to get my b/p

under control), my protein level started to drop and after 6 months of

prednisone tx my levels are around 0.2 grams....and my % function is showing

around 45% up from 35% at the start. What they figure is happening is at dx

my kidneys were highly inflamed on top of the scarring damage thus causing

my function to show up lower than it actually was. As the prednisone has

brought down the inflammation and dropped the protein spill my true function

is finally showing it's face. However my biopsy report shows lots of

crescents a....80% of glomeruli completely scarred with crescents.....so

who's to say exactly where I will end up down the road. For now I'm happy

with the labs I've gotten, my creatinine level has stayed constant between

1.9 and 2.3 since diagnosis and my b/p is finally under control for now.

As for prednisone treatment, listen to your neph he knows what he's

doing. Prednisone is a nasty, nasty, nasty drug with long term side effects

that are worse than IgAN itself....however in cases where protein spill is

very high (3+ or higher is my nephs starting point) it can help tame IgAN

and bring the protein spill down.

I've also had my tonsils removed since dx, in part due to the

controversial theory that it may help IgAN. The other part was due to the

fact that I've had horrid problems with them for years and on the prednisone

I started to develop cyst like discharge from them constantly. My neph is

watching my labs closely to see if the removal of the tonsils will help in

the long term.

And don't worry about the pessimism, we all go thru that stage too.

It's a difficult thing to come to terms with the sudden knowledge that your

body is failing you. A few months after my dx I sounded very much like you,

now 7+ months into living with IgAN and things are becoming much less

overwhelming and more routine. You'll get there, all it takes is time.

Amy

RE: They're taking me off the Prednisone

> Amy, did I read you right. Did your function go UP from 35% to 45% with

> treatment? If so, that is a tremendous encouragement to me, because I

just

> assumed the best I can do is hang on to what I've got. Another question

to

> whoever might know: You all are talking about being on Prednisone off and

> on. My doctor has ruled out prednisone for now, something about the

> " aggressive " part of my disease is over with and it wouldn't do me any

good.

>

>

>

> Last, but not least, I want to apologize for my pessimism to JPVictor and

> anyone else who has read my pessimistic replies.

[Guest guest]

Hey ,

Yep I did see an increase in % function after starting the prednisone.

In my case the theory goes like this....I was in the midst of a very

aggressive part of the disease at dx, they started me with aggressive tx

right off the bat (high doses of prednisone and ACE inhibitors to get my b/p

under control), my protein level started to drop and after 6 months of

prednisone tx my levels are around 0.2 grams....and my % function is showing

around 45% up from 35% at the start. What they figure is happening is at dx

my kidneys were highly inflamed on top of the scarring damage thus causing

my function to show up lower than it actually was. As the prednisone has

brought down the inflammation and dropped the protein spill my true function

is finally showing it's face. However my biopsy report shows lots of

crescents a....80% of glomeruli completely scarred with crescents.....so

who's to say exactly where I will end up down the road. For now I'm happy

with the labs I've gotten, my creatinine level has stayed constant between

1.9 and 2.3 since diagnosis and my b/p is finally under control for now.

As for prednisone treatment, listen to your neph he knows what he's

doing. Prednisone is a nasty, nasty, nasty drug with long term side effects

that are worse than IgAN itself....however in cases where protein spill is

very high (3+ or higher is my nephs starting point) it can help tame IgAN

and bring the protein spill down.

I've also had my tonsils removed since dx, in part due to the

controversial theory that it may help IgAN. The other part was due to the

fact that I've had horrid problems with them for years and on the prednisone

I started to develop cyst like discharge from them constantly. My neph is

watching my labs closely to see if the removal of the tonsils will help in

the long term.

And don't worry about the pessimism, we all go thru that stage too.

It's a difficult thing to come to terms with the sudden knowledge that your

body is failing you. A few months after my dx I sounded very much like you,

now 7+ months into living with IgAN and things are becoming much less

overwhelming and more routine. You'll get there, all it takes is time.

Amy

RE: They're taking me off the Prednisone

> Amy, did I read you right. Did your function go UP from 35% to 45% with

> treatment? If so, that is a tremendous encouragement to me, because I

just

> assumed the best I can do is hang on to what I've got. Another question

to

> whoever might know: You all are talking about being on Prednisone off and

> on. My doctor has ruled out prednisone for now, something about the

> " aggressive " part of my disease is over with and it wouldn't do me any

good.

>

>

>

> Last, but not least, I want to apologize for my pessimism to JPVictor and

> anyone else who has read my pessimistic replies.