Re: New member...want to know what to ask the neph

[Guest guest]

Welcome to the group, and, I might add, welcome to the club in terms of

being tired. That seems to be the most common complaint of all.

Are you going to be doing a 24 hour urine collection for your annual? That's

the only way of telling how much proteinuria you really have, and it gives

you your creatinine clearance as well - which is the main method of knowing

where you are in terms of kidney function.

These are all you need to know to keep track and compare, at this stage:

Serum creatinine

Creatinine clearance

Proteinuria

Blood pressure

Eventually, as people progress into renal insufficiency, you want to know

other things like hemoglobin, potassium and phosphorus - but that's probably

a little premature at this time.

Pierre

New member...want to know what to ask the neph

> Hi everyone! I am a new member and am so happy to see there is a

> support group for this type of disease. I was diagnosed with IGAN in

> January 2001, at the time my nephrologist said it was slow

> progressing and that we would do annual exams, blood checks and urine

> tests to be sure of how the disease is progressing. Anyway, I go in

> on 8/8/02 for my annual. I have never known my creatinine and bun,

> those types of things, but my protein has always been around 1,100,

> every time its checked. What numbers would be helpful to anyone that

> wants to help me? I would like to know where I'm at, as far as the

> progression of this disease, in relation to other members of the

> group. Also, I have one question that I would like anyone to answer.

> With IGAN, is it normal to be tired alot of the time? Not sleepy,

> just tired, feeling like you need to rest? Thanks so much for your

> help.

>

>

>

>

[Guest guest]

Thanks for answering my questions so quickly. Yes, I am turning in a

24 hour urine collection and having a blood draw before the

appointment. And thanks for answering the one question that has

always bothered me! I am so tired of being tired! (laugh) but now

when I say it, at least I wont feel like I'm just being lazy. I will

post my test results when I receive them and hopefully, get a fuller

understanding of where I am at, progression wise with this disease.

Thanks again!!

Karie

> Welcome to the group, and, I might add, welcome to the club in

terms of

> being tired. That seems to be the most common complaint of all.

>

> Are you going to be doing a 24 hour urine collection for your

annual? That's

> the only way of telling how much proteinuria you really have, and

it gives

> you your creatinine clearance as well - which is the main method of

knowing

> where you are in terms of kidney function.

>

> These are all you need to know to keep track and compare, at this

stage:

>

> Serum creatinine

> Creatinine clearance

> Proteinuria

> Blood pressure

>

> Eventually, as people progress into renal insufficiency, you want

to know

> other things like hemoglobin, potassium and phosphorus - but that's

probably

> a little premature at this time.

>

> Pierre

>

>

> New member...want to know what to ask the neph

>

>

> > Hi everyone! I am a new member and am so happy to see there is a

> > support group for this type of disease. I was diagnosed with IGAN

in

> > January 2001, at the time my nephrologist said it was slow

> > progressing and that we would do annual exams, blood checks and

urine

> > tests to be sure of how the disease is progressing. Anyway, I go

in

> > on 8/8/02 for my annual. I have never known my creatinine and bun,

> > those types of things, but my protein has always been around

1,100,

> > every time its checked. What numbers would be helpful to anyone

that

> > wants to help me? I would like to know where I'm at, as far as the

> > progression of this disease, in relation to other members of the

> > group. Also, I have one question that I would like anyone to

answer.

> > With IGAN, is it normal to be tired alot of the time? Not sleepy,

> > just tired, feeling like you need to rest? Thanks so much for your

> > help.

> >

> >

> >

> >

[Guest guest]

I don't know about that. I say " I'm tired " and I still feel lazy...... Maybe

being lazy is good sometimes....... :-)

New member...want to know what to ask the neph

> >

> >

> > > Hi everyone! I am a new member and am so happy to see there is a

> > > support group for this type of disease. I was diagnosed with IGAN

> in

> > > January 2001, at the time my nephrologist said it was slow

> > > progressing and that we would do annual exams, blood checks and

> urine

> > > tests to be sure of how the disease is progressing. Anyway, I go

> in

> > > on 8/8/02 for my annual. I have never known my creatinine and bun,

> > > those types of things, but my protein has always been around

> 1,100,

> > > every time its checked. What numbers would be helpful to anyone

> that

> > > wants to help me? I would like to know where I'm at, as far as the

> > > progression of this disease, in relation to other members of the

> > > group. Also, I have one question that I would like anyone to

> answer.

> > > With IGAN, is it normal to be tired alot of the time? Not sleepy,

> > > just tired, feeling like you need to rest? Thanks so much for your

> > > help.

> > >

> > >

> > >

> > >

[Guest guest]

" Also, I have one question that I would like anyone to answer.

With IGAN, is it normal to be tired alot of the time? Not sleepy,

just tired, feeling like you need to rest? Thanks so much for your

help. "

A big YES is the answer, certainly for me and there has been a lot of chat

about this before.

Sally.

New member...want to know what to ask the neph

Hi everyone! I am a new member and am so happy to see there is a

support group for this type of disease. I was diagnosed with IGAN in

January 2001, at the time my nephrologist said it was slow

progressing and that we would do annual exams, blood checks and urine

tests to be sure of how the disease is progressing. Anyway, I go in

on 8/8/02 for my annual. I have never known my creatinine and bun,

those types of things, but my protein has always been around 1,100,

every time its checked. What numbers would be helpful to anyone that

wants to help me? I would like to know where I'm at, as far as the

progression of this disease, in relation to other members of the

group. Also, I have one question that I would like anyone to answer.

With IGAN, is it normal to be tired alot of the time? Not sleepy,

just tired, feeling like you need to rest? Thanks so much for your

help.

[Guest guest]

Ditto DOUBLE DOUBLE YES, tired for me is not the right word, exhausted

beyond belief, legs like lead balloons, blah blah. Tired to me is lack

of sleep problem, fatigue covers a multitude of sins. I get peed off

with people saying oh are you tired , go to bed. I feel like

screaming at them, I am not bloody tired you planks, my body is just

exhausted..but then I think what's the point, I don't need to justify

myself to anyone. Can you tell this subject rankles me tee hee

New member...want to know what to ask the neph

Hi everyone! I am a new member and am so happy to see there is a

support group for this type of disease. I was diagnosed with IGAN in

January 2001, at the time my nephrologist said it was slow

progressing and that we would do annual exams, blood checks and urine

tests to be sure of how the disease is progressing. Anyway, I go in

on 8/8/02 for my annual. I have never known my creatinine and bun,

those types of things, but my protein has always been around 1,100,

every time its checked. What numbers would be helpful to anyone that

wants to help me? I would like to know where I'm at, as far as the

progression of this disease, in relation to other members of the

group. Also, I have one question that I would like anyone to answer.

With IGAN, is it normal to be tired alot of the time? Not sleepy,

just tired, feeling like you need to rest? Thanks so much for your

help.

[Guest guest]

I'll have to watch my language from now on then, so as to not inadvertently

confuse tired and fatigued : )

Pierre

RE: New member...want to know what to ask the neph

> Ditto DOUBLE DOUBLE YES, tired for me is not the right word, exhausted

> beyond belief, legs like lead balloons, blah blah. Tired to me is lack

> of sleep problem, fatigue covers a multitude of sins. I get peed off

> with people saying oh are you tired , go to bed. I feel like

> screaming at them, I am not bloody tired you planks, my body is just

> exhausted..but then I think what's the point, I don't need to justify

> myself to anyone. Can you tell this subject rankles me tee hee

>

>

>

[Guest guest]

Thanks for the great responses from everyone!! And yes, I also

believe there is a definitive difference between tired and fatigued

(laugh)...

Karie

> I'll have to watch my language from now on then, so as to not

inadvertently

> confuse tired and fatigued : )

> Pierre

>

> RE: New member...want to know what to ask the neph

>

>

> > Ditto DOUBLE DOUBLE YES, tired for me is not the right word,

exhausted

> > beyond belief, legs like lead balloons, blah blah. Tired to me

is lack

> > of sleep problem, fatigue covers a multitude of sins. I get peed

off

> > with people saying oh are you tired , go to bed. I feel like

> > screaming at them, I am not bloody tired you planks, my body is

just

> > exhausted..but then I think what's the point, I don't need to

justify

> > myself to anyone. Can you tell this subject rankles me tee hee

> >

> >

> >

[Guest guest]

Ooops went a bit off my rocker there didn't I. Sorry if I caused

offence to anyone, I was not referring to anyone within our little group

honest guv!!! Pierre you can say what you like to me you know that, I

would hate to think you were censoring your messages tee hee!!!!

Tired or fatigued or whatever, I hate how it makes me feel. But when I

am tired I sleep, when I am fatigued I am just lifeless.

Ta Ta for now.

Re: New member...want to know what to ask the neph

I'll have to watch my language from now on then, so as to not

inadvertently

confuse tired and fatigued : )

Pierre

RE: New member...want to know what to ask the neph

> Ditto DOUBLE DOUBLE YES, tired for me is not the right word, exhausted

> beyond belief, legs like lead balloons, blah blah. Tired to me is

lack

> of sleep problem, fatigue covers a multitude of sins. I get peed off

> with people saying oh are you tired , go to bed. I feel like

> screaming at them, I am not bloody tired you planks, my body is just

> exhausted..but then I think what's the point, I don't need to justify

> myself to anyone. Can you tell this subject rankles me tee hee

>

>

>

[Guest guest]

could it be that we're all tired of being fatigued?

RE: New member...want to know what to ask the neph

> >

> >

> > > Ditto DOUBLE DOUBLE YES, tired for me is not the right word,

> exhausted

> > > beyond belief, legs like lead balloons, blah blah. Tired to me

> is lack

> > > of sleep problem, fatigue covers a multitude of sins. I get peed

> off

> > > with people saying oh are you tired , go to bed. I feel like

> > > screaming at them, I am not bloody tired you planks, my body is

> just

> > > exhausted..but then I think what's the point, I don't need to

> justify

> > > myself to anyone. Can you tell this subject rankles me tee hee

> > >

> > >

> > >

>

>

>

[Guest guest]

Or as one of your fellow countryman (Ozzy Ozbourne) once said: " I'm sick and

tired of being sick and tired. "

RE: New member...want to know what to ask the neph

> >

> >

> > > Ditto DOUBLE DOUBLE YES, tired for me is not the right word,

> exhausted

> > > beyond belief, legs like lead balloons, blah blah. Tired to me

> is lack

> > > of sleep problem, fatigue covers a multitude of sins. I get peed

> off

> > > with people saying oh are you tired , go to bed. I feel like

> > > screaming at them, I am not bloody tired you planks, my body is

> just

> > > exhausted..but then I think what's the point, I don't need to

> justify

> > > myself to anyone. Can you tell this subject rankles me tee hee

> > >

> > >

> > >

>

>

>

[Guest guest]

Good thing you guys and gals aren't French, because you would have to use

the same word for both tired and fatigued : )

Pierre

P.S. For and others, just kidding. Not trying to make light of it.

RE: New member...want to know what to ask the neph

> > >

> > >

> > > > Ditto DOUBLE DOUBLE YES, tired for me is not the right word,

> > exhausted

> > > > beyond belief, legs like lead balloons, blah blah. Tired to me

> > is lack

> > > > of sleep problem, fatigue covers a multitude of sins. I get peed

> > off

> > > > with people saying oh are you tired , go to bed. I feel like

> > > > screaming at them, I am not bloody tired you planks, my body is

> > just

> > > > exhausted..but then I think what's the point, I don't need to

> > justify

> > > > myself to anyone. Can you tell this subject rankles me tee hee

> > > >

> > > >

> > > >

> >

> >

> >

[Guest guest]

It goes without saying that I'm in full agreement here. The bugging one I

hate is " Oh I get tired too " .......not like me you don't, but I usually just

say, I'm sure you do but at least when you wake you feel refreshed, imagine

feeling exactly the same as before going to bed.......that stops the

conversation. The trouble with looking well and no visible problem is also

difficult for people to comprehend because they only time they see me is

when I'm feeling up to things ergo looks fine.

Did you know that smiling releases good chemicals into the body even if its

a fake smile......it has the same effect........keep grimacing.

Sally.

New member...want to know what to ask the neph

Hi everyone! I am a new member and am so happy to see there is a

support group for this type of disease. I was diagnosed with IGAN in

January 2001, at the time my nephrologist said it was slow

progressing and that we would do annual exams, blood checks and urine

tests to be sure of how the disease is progressing. Anyway, I go in

on 8/8/02 for my annual. I have never known my creatinine and bun,

those types of things, but my protein has always been around 1,100,

every time its checked. What numbers would be helpful to anyone that

wants to help me? I would like to know where I'm at, as far as the

progression of this disease, in relation to other members of the

group. Also, I have one question that I would like anyone to answer.

With IGAN, is it normal to be tired alot of the time? Not sleepy,

just tired, feeling like you need to rest? Thanks so much for your

help.

[Guest guest]

Reply to and Marty and every other member -

AMEN!!!! (laugh)

Karie

> > > I'll have to watch my language from now on then, so as to not

> > inadvertently

> > > confuse tired and fatigued : )

> > > Pierre

> > >

> > > RE: New member...want to know what to ask the

neph

> > >

> > >

> > > > Ditto DOUBLE DOUBLE YES, tired for me is not the right word,

> > exhausted

> > > > beyond belief, legs like lead balloons, blah blah. Tired

to me

> > is lack

> > > > of sleep problem, fatigue covers a multitude of sins. I

get peed

> > off

> > > > with people saying oh are you tired , go to bed. I

feel like

> > > > screaming at them, I am not bloody tired you planks, my

body is

> > just

> > > > exhausted..but then I think what's the point, I don't need

to

> > justify

> > > > myself to anyone. Can you tell this subject rankles me tee

hee

> > > >

> > > >

> > > >

> >

> >

> >

[Guest guest]

Hi!

I am a new member as well. I have not been diagnosed with IgaNyet

buy my nephrologist is suspecting it as a cause of the common

symptoms which I have. To answer your questions about numbers in

terms of creatinine, bun, and protein, I might be able to give you

some useful information. Your protein count of 1,100 is somewhat

high. Any time protein is over 1g per day pay more attention to it

if possible. With creatinine, this number is very important as it

measures the level of pollutants in your blood stream that your

kidneys are usually supposed to filter. The usual range for nomrally

functioning kidneys is 1000-2000 mg on a 24hr urine. My most recent

24hr number was at 2100. If your creatinine level suddenly becomes

extremely high your nephrologist may recommend more aggresive

treatment. When your tests are done, request copies of all of your

labs...24hr urine, blood tests, etc. These will give you a good

indication of the current status of your kidney fucntion. I am more

shady on bun numbers. These numbers vary on blood tests and 24hr

urines. I will do more research and get back to you. I am always

doing research on my possible Igan status so if you ever have any

questions just let me know!

> " Also, I have one question that I would like anyone to answer.

> With IGAN, is it normal to be tired alot of the time? Not sleepy,

> just tired, feeling like you need to rest? Thanks so much for your

> help. "

>

> A big YES is the answer, certainly for me and there has been a lot

of chat

> about this before.

> Sally.

>

>

>

> New member...want to know what to ask the neph

>

>

> Hi everyone! I am a new member and am so happy to see there is a

> support group for this type of disease. I was diagnosed with IGAN

in

> January 2001, at the time my nephrologist said it was slow

> progressing and that we would do annual exams, blood checks and

urine

> tests to be sure of how the disease is progressing. Anyway, I go

in

> on 8/8/02 for my annual. I have never known my creatinine and bun,

> those types of things, but my protein has always been around

1,100,

> every time its checked. What numbers would be helpful to anyone

that

> wants to help me? I would like to know where I'm at, as far as the

> progression of this disease, in relation to other members of the

> group. Also, I have one question that I would like anyone to

answer.

> With IGAN, is it normal to be tired alot of the time? Not sleepy,

> just tired, feeling like you need to rest? Thanks so much for your

> help.

>

>

>

[Guest guest]

Hi ,

A very warm welcome to the group. You have come to the right place to ask

questions and to find an enormous amount of support for all you are going

through.

As for the fatigue, it is one of the most common things many of us battle

with. I know I have really struggled with extreme fatigue myself. I do find

that when I persevere and commit to exercise no matter how I feel, I do have

more energy although it certainly does not eliminate the fatigue.

On the question of diet, I am already on a low potassium and low protein diet

based on my nephrologist's recommendations after considering where my test

results are, and if I stray and eat too much protein, I do suffer by feeling

worse the next day. Just helps to motivate me to stay on track with my diet

:-)

Do you have any test results you can share so we have some idea of where you

are in your progression?

Again, welcome to the group .

[Guest guest]

Hi everyone,

My name is and I am a new member as well. I believe I have had

IGA Nephropathy for about 3 years but I was only diagnosed 6 months

ago. I am in the Air Force and unsure what they are going to do with

me. My Nephrologist tried the Prednisone thing and it didn't work.

I have only been off the Prednisone for about a month and man have I

been tired since then. I never really noticed being tired before but

now I am just BLAH. My question for the group is, does anyone notice

a difference on how they feel by their diet? I try to eat right and

I try to exercise but sometimes it is just very difficult. The

reason I am asking is that I haven't noticed any difference.

I look forward to chatting with everyone.

> > " Also, I have one question that I would like anyone to answer.

> > With IGAN, is it normal to be tired alot of the time? Not sleepy,

> > just tired, feeling like you need to rest? Thanks so much for your

> > help. "

> >

> > A big YES is the answer, certainly for me and there has been a

lot

> of chat

> > about this before.

> > Sally.

> >

> >

> >

> > New member...want to know what to ask the neph

> >

> >

> > Hi everyone! I am a new member and am so happy to see there is a

> > support group for this type of disease. I was diagnosed with

IGAN

> in

> > January 2001, at the time my nephrologist said it was slow

> > progressing and that we would do annual exams, blood checks and

> urine

> > tests to be sure of how the disease is progressing. Anyway, I

go

> in

> > on 8/8/02 for my annual. I have never known my creatinine and

bun,

> > those types of things, but my protein has always been around

> 1,100,

> > every time its checked. What numbers would be helpful to anyone

> that

> > wants to help me? I would like to know where I'm at, as far as

the

> > progression of this disease, in relation to other members of the

> > group. Also, I have one question that I would like anyone to

> answer.

> > With IGAN, is it normal to be tired alot of the time? Not

sleepy,

> > just tired, feeling like you need to rest? Thanks so much for

your

> > help.

> >

> >

> >

[Guest guest]

Welcome to the group .

The army let me hang around until my serum creatinine was up above 200

umol/L, and then, that combined with the hard-to-control blood pressure

forced the medical board to fail me. By the way, I was also a member of an

air force fighter squadron at one time in the 1970's (CF-5 Freedom Fighters

and F-105's, before our air force switched to CF-18 Hornets).

To answer your question about diet, it depends on how advanced you are in

terms of renal failure, and how much of a problem proteinuria is.

Personally, I've found that, as the renal failure advanced, I got less and

less hungry, and had to start forcing myself to eat. Fatigue though, is

probably the single most common complaint on this group - not much help, but

at least you're not alone.

It will be useful for you to know:

- serum creatine (from blood work)

- creatinine clearance (from a 24 hour urine collection)

- proteinuria (also from the 24 hour urine)

In addition, as you go along, anemia may eventually develop, so, it can be

useful to keep track of hemoglobin and/or hematocrit as well. Your doctor

will monitor these periodically of course (also things like sodium,

potassium, etc.). Some people like to know these things, and others like to

just leave it to the doctor. If you know your serum creatinine and

proteinuria though, it helps when you want to compare with others or ask

about various symptoms. In the long run, like a few years from now, you may

find it useful to have kept track of those numbers.

Pierre

New member...want to know what to ask the neph

> > >

> > >

> > > Hi everyone! I am a new member and am so happy to see there is a

> > > support group for this type of disease. I was diagnosed with

> IGAN

> > in

> > > January 2001, at the time my nephrologist said it was slow

> > > progressing and that we would do annual exams, blood checks and

> > urine

> > > tests to be sure of how the disease is progressing. Anyway, I

> go

> > in

> > > on 8/8/02 for my annual. I have never known my creatinine and

> bun,

> > > those types of things, but my protein has always been around

> > 1,100,

> > > every time its checked. What numbers would be helpful to anyone

> > that

> > > wants to help me? I would like to know where I'm at, as far as

> the

> > > progression of this disease, in relation to other members of the

> > > group. Also, I have one question that I would like anyone to

> > answer.

> > > With IGAN, is it normal to be tired alot of the time? Not

> sleepy,

> > > just tired, feeling like you need to rest? Thanks so much for

> your

> > > help.

> > >

> > >

> > >

[Guest guest]

Hi

Welcome to the group, sorry to hear of your diagnosis of IGAN. The

tiredness or fatigue as I prefer to call it, is prevalent among many of

us, myself included, in fact this is one of the main bugs with me. I

have found no difference in a healthy eating regime and light exercise

at all, but that said, it must help in other areas, i.e. overall health.

I am afraid, that unless you have other issues that could be making you

extra fatigued, i.e. insomnia, anemia, this is just one part of the

condition we would appear to have live with, but I am next week taking

part in some clinical trials at my renal department, and the fatigue has

been promised to me to be looked into. Will keep you posted.

New member...want to know what to ask the neph

> >

> >

> > Hi everyone! I am a new member and am so happy to see there is a

> > support group for this type of disease. I was diagnosed with

IGAN

> in

> > January 2001, at the time my nephrologist said it was slow

> > progressing and that we would do annual exams, blood checks and

> urine

> > tests to be sure of how the disease is progressing. Anyway, I

go

> in

> > on 8/8/02 for my annual. I have never known my creatinine and

bun,

> > those types of things, but my protein has always been around

> 1,100,

> > every time its checked. What numbers would be helpful to anyone

> that

> > wants to help me? I would like to know where I'm at, as far as

the

> > progression of this disease, in relation to other members of the

> > group. Also, I have one question that I would like anyone to

> answer.

> > With IGAN, is it normal to be tired alot of the time? Not

sleepy,

> > just tired, feeling like you need to rest? Thanks so much for

your

> > help.

> >

> >

> >

[Guest guest]

,

Thank you for the warm welcome. My protein at the time I was

diagnosed (6 months ago) was 1.2 grams a day and is now 1.4 grams a

day. My Creative Clearance was 180 6 months ago and is now 128. I

have only had 2 test done since my diagnosis and the Urologists that

saw me the past 3 years never did a 24 hour urine collection so I

don't know if I am going up, down, or staying relatively the same.

This Sunday I am due for another collection so I will know more next

week.

> Hi ,

>

> A very warm welcome to the group. You have come to the right place

to ask

> questions and to find an enormous amount of support for all you are

going

> through.

>

> As for the fatigue, it is one of the most common things many of us

battle

> with. I know I have really struggled with extreme fatigue myself.

I do find

> that when I persevere and commit to exercise no matter how I feel,

I do have

> more energy although it certainly does not eliminate the fatigue.

>

> On the question of diet, I am already on a low potassium and low

protein diet

> based on my nephrologist's recommendations after considering where

my test

> results are, and if I stray and eat too much protein, I do suffer

by feeling

> worse the next day. Just helps to motivate me to stay on track

with my diet

> :-)

>

> Do you have any test results you can share so we have some idea of

where you

> are in your progression?

>

> Again, welcome to the group .

>

>

>

>

>

>

[Guest guest]

,

Thank you. Please keep us posted on what you find out about the

fatigue.

> > > " Also, I have one question that I would like anyone to answer.

> > > With IGAN, is it normal to be tired alot of the time? Not

sleepy,

> > > just tired, feeling like you need to rest? Thanks so much for

your

> > > help. "

> > >

> > > A big YES is the answer, certainly for me and there has been a

> lot

> > of chat

> > > about this before.

> > > Sally.

> > >

> > >

> > >

> > > New member...want to know what to ask the neph

> > >

> > >

> > > Hi everyone! I am a new member and am so happy to see there

is a

> > > support group for this type of disease. I was diagnosed with

> IGAN

> > in

> > > January 2001, at the time my nephrologist said it was slow

> > > progressing and that we would do annual exams, blood checks

and

> > urine

> > > tests to be sure of how the disease is progressing. Anyway, I

> go

> > in

> > > on 8/8/02 for my annual. I have never known my creatinine and

> bun,

> > > those types of things, but my protein has always been around

> > 1,100,

> > > every time its checked. What numbers would be helpful to

anyone

> > that

> > > wants to help me? I would like to know where I'm at, as far

as

> the

> > > progression of this disease, in relation to other members of

the

> > > group. Also, I have one question that I would like anyone to

> > answer.

> > > With IGAN, is it normal to be tired alot of the time? Not

> sleepy,

> > > just tired, feeling like you need to rest? Thanks so much for

> your

> > > help.

> > >

> > >

> > >

[Guest guest]

, sorry you had to join this group-- I have been doing the

prednisone thing for a year and 3 months-- it has been successful- I

started at 60mg a day it was terrible but that was only for 3months

then we started to wean down and now I am on 20 mg everyother day and

it has raised my function and reduced my protein. My Dr is very

pleased and has treated 12 patients this way. Hang in there!!

matt

> Hi ,

>

> A very warm welcome to the group. You have come to the right place

to ask

> questions and to find an enormous amount of support for all you are

going

> through.

>

> As for the fatigue, it is one of the most common things many of us

battle

> with. I know I have really struggled with extreme fatigue myself.

I do find

> that when I persevere and commit to exercise no matter how I feel,

I do have

> more energy although it certainly does not eliminate the fatigue.

>

> On the question of diet, I am already on a low potassium and low

protein diet

> based on my nephrologist's recommendations after considering where

my test

> results are, and if I stray and eat too much protein, I do suffer

by feeling

> worse the next day. Just helps to motivate me to stay on track

with my diet

> :-)

>

> Do you have any test results you can share so we have some idea of

where you

> are in your progression?

>

> Again, welcome to the group .

>

>

>

>

>

>

[Guest guest]

Matt,

Thanks for the words. Unfortunately the Prednisone did not work for

me. I was on it for two months and my protein went up and my

Creatine Clearance went down. My neph still says I have a good

chance of not going into ESRD. Since I have been of the Prednisone I

have noticed that I have been severely depressed and overly tired. I

have tried quitting the coffee but I fell asleep at my desk today at

work. Not good! I called my Neph and he told me that I could have

one cup of coffee a day. I notice that I feel the worst after I eat

lunch. I am seriously considering not eating lunch from now on and

just eat light snacks instead. I find that when I do that I feel

much better.

> > Hi ,

> >

> > A very warm welcome to the group. You have come to the right

place

> to ask

> > questions and to find an enormous amount of support for all you

are

> going

> > through.

> >

> > As for the fatigue, it is one of the most common things many of

us

> battle

> > with. I know I have really struggled with extreme fatigue

myself.

> I do find

> > that when I persevere and commit to exercise no matter how I

feel,

> I do have

> > more energy although it certainly does not eliminate the fatigue.

> >

> > On the question of diet, I am already on a low potassium and low

> protein diet

> > based on my nephrologist's recommendations after considering

where

> my test

> > results are, and if I stray and eat too much protein, I do suffer

> by feeling

> > worse the next day. Just helps to motivate me to stay on track

> with my diet

> > :-)

> >

> > Do you have any test results you can share so we have some idea

of

> where you

> > are in your progression?

> >

> > Again, welcome to the group .

> >

> >

> >

> >

> >

> >

[Guest guest]

You have to give the prednisone treatment time-- it took me 5 months

to reduce the protein and up the clearance rate-- my Dr tells me that

Avapro also helps preserve kidney function and reduce proteinuria--

ask yours. Are you taking fish oil? I also found that while on

psone, the more i exercised the better i felt. It was hard, b/c we

had a 6 mo old boy at the time, but you have to do it.

matt

> > > Hi ,

> > >

> > > A very warm welcome to the group. You have come to the right

> place

> > to ask

> > > questions and to find an enormous amount of support for all you

> are

> > going

> > > through.

> > >

> > > As for the fatigue, it is one of the most common things many of

> us

> > battle

> > > with. I know I have really struggled with extreme fatigue

> myself.

> > I do find

> > > that when I persevere and commit to exercise no matter how I

> feel,

> > I do have

> > > more energy although it certainly does not eliminate the

fatigue.

> > >

> > > On the question of diet, I am already on a low potassium and

low

> > protein diet

> > > based on my nephrologist's recommendations after considering

> where

> > my test

> > > results are, and if I stray and eat too much protein, I do

suffer

> > by feeling

> > > worse the next day. Just helps to motivate me to stay on track

> > with my diet

> > > :-)

> > >

> > > Do you have any test results you can share so we have some idea

> of

> > where you

> > > are in your progression?

> > >

> > > Again, welcome to the group .

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi ,

I don't mean to sound preachy, but prednisone can go both ways, 3 actually,

if you count those who don't have problems with it. By that, I mean that

some people can get depressed, and some can get very anxious on it.

Prednisone can lift a person's spirits somewhat, and when you stop taking

it, you can feel depressed. Blood pressure medications can cause it too -

some more than others.Tiredness can be a symptom of depression as much as it

can of chronic kidney disease. I'm not suggesting this applies to you, but,

it can apply to anyone of us, especially with chronic disease added to the

mix. Aggressiveness or quickness to anger can be symptoms of depression

also, as can digestive problems. Whenever someone mentions feeling depressed

on the group, I always try to say a few words about it, because depression

can be dangerous, and it's not uncommon at all. About 3 years ago, one of my

relatives by marriage was depressed due to lack of work. A big, powerful man

(physically I mean), one day, they found him dead. He had hung himself in a

barn behind his house. Nobody ever thought he was that depressed. He was

about my age too.

Anyone who has depressed feelings should absolutely talk to their family

doctor about it. Nephrologists aren't unfamiliar with it either.

Pierre

Re: New member...want to know what to ask the neph

> Matt,

>

> Thanks for the words. Unfortunately the Prednisone did not work for

> me. I was on it for two months and my protein went up and my

> Creatine Clearance went down. My neph still says I have a good

> chance of not going into ESRD. Since I have been of the Prednisone I

> have noticed that I have been severely depressed and overly tired. I

> have tried quitting the coffee but I fell asleep at my desk today at

> work. Not good! I called my Neph and he told me that I could have

> one cup of coffee a day. I notice that I feel the worst after I eat

> lunch. I am seriously considering not eating lunch from now on and

> just eat light snacks instead. I find that when I do that I feel

> much better.

>

>

>