Re: I have some questions

June 23, 2004

Hi Dawn,

I have not heard of anyone on this board having a latex allergy, but then

again it has never come up to my knowledge. I know I have no allergies but I

can

only speak for myself.

As far as what tests should be performed, creatinine, potassium, urine

protein and creatinine clearance are basics, and to that you can add BUN for

some

docs, and perhaps phosphorus. The Nephrologist just really should be monitoring

your renal function and when it gets below say 30 or 40%, you might add

hematocrit and hemoglobin to keep an eye out for anemia.

There are dip sticks you can buy that can test the urine yourself for protein

and blood if you want to, but I never have because I feel the testing my Neph

does is frequent enough and I don't want to stress of daily variations in my

levels. I think that would just be a personal choice though.

In a message dated 6/23/2004 7:03:55 PM Pacific Daylight Time,

sunrea727@... writes:

> My question is; does anyone else on this board have a

> Latex allergy? Does anyone know what blood test should be performed on a

> regular basis for people with IGA? What should doctors be testing for? Can I

> test my own urine to find if I have blood in it?

>

June 23, 2004

Hi Everyone,

I have a few questions. Before I was dx I found out I had a Latex allergy. I

apparently was born with this allergy I had a break out when I was in

diapers (cloth) with rubber pants but they attributed it to the fibers in

cloth diapers and the break outs stop when I was in disposables. I over the

course of my life continued to have break out's every few years. Doctors

always blamed it on shell fish or soap. Because it is not common to have a

sever Latex allergy with first have certain symptoms. However, they didn't

know until about the Latex allergy until few years ago when I purchased a

older home. I was in it for two weeks and had a full blown break out and

ended up in the hospital. It was in the midst of the horrible break out that

they discovered that I may have IGA. Latex allergies are considered to be an

auto immune disease. My question is; does anyone else on this board have a

Latex allergy? Does anyone know what blood test should be performed on a

regular basis for people with IGA? What should doctors be testing for? Can I

test my own urine to find if I have blood in it?

Dawn McReynolds

Aurora Women's Center, Inc.

Headquarters

19946 Harper

Harper Woods, MI

48225

Located in the Salvation Army Building

24140 Mound

Warren, MI 48091

_____

From: brandywinebw

Sent: Wednesday, June 23, 2004 7:32 PM

To: iga-nephropathy

Subject: Just got back from visiting with Neph

He gave me Zantac for the reflux and another lab script. I don't

have a UTI, which is what he was thinking with BP being all over the

place, my BP was as normal as could be today, 128/92. Once I get my

lab work done I'll know a little bit more about my kidney functions.

Last time I had it checked my creatinine was in the 4.? range and my

cholesterol was a bit high. Since the Prednisone did not work and my

neph doesn't like fish oil, I'm in the " what now " catagory. I think

he's just waiting for renal failure. I really like him but he seems

almost lost on what to do now, I know there is a point when nothing

can be done but I've only been seeing him since Feb. and I think he's

ready to give up.

BRANDY

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June 24, 2004

My Neph says I really don't need to be seen but maybe once a year. probably

a good thing. However, I went to my family doc. Explaining how tired I was

all the time and she did a blood test. She said I was anemic. She proscribed

ferrous so4 325 mg. So. I am wondering if I'm losing blood in my urine. My

neph did a test on my urine back when I was dx. He said it was weird because

the blood that was in my urine was whole blood cells rather then blood cells

that were broke apart like most blood cells are when they are found in

urine. Then, he ran other test to see how the tubes were (don't know the

names) that run from the kidney to the bladder and everything came out

normal. I think he's done quiet a bit of testing and really doesn't think

IGA is a big deal for me. He said, it will never (well most likely not) get

to the point where I would need more care. He said if it were going to

progress we would have seen it already do so. I think, after reading

everything I have about IGA he may be right. I guess he makes me feel like

I shouldn't be worried about IGA. That's why I don't go to him more often

for testing. He is a specialist, and is very busy as well. After hearing how

many others have the same pain that I have been experiencing and hearing

that no one can really identify it I feel what's the point in going in more

often then once a year anyway. I'm doing good with my everything. So, I

thought maybe I can possibly monitor myself. If something gets bad or

increases too much then I can call and make an appointment. That's why I

asked about the dip sticks, I read someone else's post and thought it might

be for me.

Dawn McReynolds

Aurora Women's Center, Inc.

Headquarters

19946 Harper

Harper Woods, MI

48225

Located in the Salvation Army Building

24140 Mound

Warren, MI 48091

_____

From: W4JC@...

Sent: Thursday, June 24, 2004 12:17 AM

To: iga-nephropathy

Subject: Re: I have some questions

Hi Dawn,

I have not heard of anyone on this board having a latex allergy, but then

again it has never come up to my knowledge. I know I have no allergies but

I can

only speak for myself.

As far as what tests should be performed, creatinine, potassium, urine

protein and creatinine clearance are basics, and to that you can add BUN for

some

docs, and perhaps phosphorus. The Nephrologist just really should be

monitoring

your renal function and when it gets below say 30 or 40%, you might add

hematocrit and hemoglobin to keep an eye out for anemia.

There are dip sticks you can buy that can test the urine yourself for

protein

and blood if you want to, but I never have because I feel the testing my

Neph

does is frequent enough and I don't want to stress of daily variations in my

levels. I think that would just be a personal choice though.

In a message dated 6/23/2004 7:03:55 PM Pacific Daylight Time,

sunrea727@... writes:

> My question is; does anyone else on this board have a

> Latex allergy? Does anyone know what blood test should be performed on a

> regular basis for people with IGA? What should doctors be testing for? Can

I

> test my own urine to find if I have blood in it?

>

June 24, 2004

I'm not a doctor, but I were, I don't think I would really be in favour of

patients dipsticking themselves all the time. It's really an ideal setup to

cause needless worry and anxiety. The blood and protein readings go up and

down all the time. It's kind of like measuring your own blood pressure often

and then worrying each time it's up (which it will be, as the normal course

of blood pressure throughout the day). I don't think there's really anything

to be gained by it.

Pierre

RE: I have some questions

>

> My Neph says I really don't need to be seen but maybe once a year.

probably

> a good thing. However, I went to my family doc. Explaining how tired I

was

> all the time and she did a blood test. She said I was anemic. She

proscribed

> ferrous so4 325 mg. So. I am wondering if I'm losing blood in my urine.

My

> neph did a test on my urine back when I was dx. He said it was weird

because

> the blood that was in my urine was whole blood cells rather then blood

cells

> that were broke apart like most blood cells are when they are found in

> urine. Then, he ran other test to see how the tubes were (don't know the

> names) that run from the kidney to the bladder and everything came out

> normal. I think he's done quiet a bit of testing and really doesn't think

> IGA is a big deal for me. He said, it will never (well most likely not)

get

> to the point where I would need more care. He said if it were going to

> progress we would have seen it already do so. I think, after reading

> everything I have about IGA he may be right. I guess he makes me feel

like

> I shouldn't be worried about IGA. That's why I don't go to him more often

> for testing. He is a specialist, and is very busy as well. After hearing

how

> many others have the same pain that I have been experiencing and hearing

> that no one can really identify it I feel what's the point in going in

more

> often then once a year anyway. I'm doing good with my everything. So, I

> thought maybe I can possibly monitor myself. If something gets bad or

> increases too much then I can call and make an appointment. That's why I

> asked about the dip sticks, I read someone else's post and thought it

might

> be for me.

>

> Dawn McReynolds

>

June 24, 2004

I'm not a doctor, but I were, I don't think I would really be in favour of

patients dipsticking themselves all the time. It's really an ideal setup to

cause needless worry and anxiety. The blood and protein readings go up and

down all the time. It's kind of like measuring your own blood pressure often

and then worrying each time it's up (which it will be, as the normal course

of blood pressure throughout the day). I don't think there's really anything

to be gained by it.

Pierre

RE: I have some questions

>

> My Neph says I really don't need to be seen but maybe once a year.

probably

> a good thing. However, I went to my family doc. Explaining how tired I

was

> all the time and she did a blood test. She said I was anemic. She

proscribed

> ferrous so4 325 mg. So. I am wondering if I'm losing blood in my urine.

My

> neph did a test on my urine back when I was dx. He said it was weird

because

> the blood that was in my urine was whole blood cells rather then blood

cells

> that were broke apart like most blood cells are when they are found in

> urine. Then, he ran other test to see how the tubes were (don't know the

> names) that run from the kidney to the bladder and everything came out

> normal. I think he's done quiet a bit of testing and really doesn't think

> IGA is a big deal for me. He said, it will never (well most likely not)

get

> to the point where I would need more care. He said if it were going to

> progress we would have seen it already do so. I think, after reading

> everything I have about IGA he may be right. I guess he makes me feel

like

> I shouldn't be worried about IGA. That's why I don't go to him more often

> for testing. He is a specialist, and is very busy as well. After hearing

how

> many others have the same pain that I have been experiencing and hearing

> that no one can really identify it I feel what's the point in going in

more

> often then once a year anyway. I'm doing good with my everything. So, I

> thought maybe I can possibly monitor myself. If something gets bad or

> increases too much then I can call and make an appointment. That's why I

> asked about the dip sticks, I read someone else's post and thought it

might

> be for me.

>

> Dawn McReynolds

>

June 24, 2004

I have no knowledge of IgAN causing allergies. Lots of people have allergies

of course, IgAN or no IgAN. Prednisone is a kind of drug that will

definitely help with allergies. Oral prednisone is often prescribed for

serious allergic reactions, serious asthma flare-ups, etc. So, if you happen

to have an allergy and you happen to be prescribed some oral prednisone for

proteinuria, it's very likely that it WILL help with any allergies you might

have.

Pierre

RE: I have some questions

> I don't have a latex allergy, but I did have allergic reactions due to

HSP/IgAN and didn't know this until I went on prednisone, and all allergies

disappeared except there are 2 that I'm still afraid to try: aloe leaves and

neosporin. What meds are you taking if you care to share. Hope you feel

better. Phyllis

>

> Dawn McReynolds wrote:

> Hi Everyone,

>

> I have a few questions. Before I was dx I found out I had a Latex allergy.

I

> apparently was born with this allergy I had a break out when I was in

> diapers (cloth) with rubber pants but they attributed it to the fibers in

> cloth diapers and the break outs stop when I was in disposables. I over

the

> course of my life continued to have break out's every few years. Doctors

> always blamed it on shell fish or soap. Because it is not common to have a

> sever Latex allergy with first have certain symptoms. However, they didn't

> know until about the Latex allergy until few years ago when I purchased a

> older home. I was in it for two weeks and had a full blown break out and

> ended up in the hospital. It was in the midst of the horrible break out

that

> they discovered that I may have IGA. Latex allergies are considered to be

an

> auto immune disease. My question is; does anyone else on this board have a

> Latex allergy? Does anyone know what blood test should be performed on a

> regular basis for people with IGA? What should doctors be testing for? Can

I

> test my own urine to find if I have blood in it?

>

> Dawn McReynolds

>

June 25, 2004

Hi ,

my creatinine level was 1.0 in 02 now it 0.8

I am so thankful to be in this support group. Yesterday, I finally decided

to talk to someone (medical) about all the things I have been experiencing

lately. I found a link on someone's page. I think it was about HSP. I read

about it I scrolled down to find the address and phone number to the Auto

Immune Disorder. I called there and talked with them at great length. They

asked several questions about me & my symptoms. They want me to see a

specialist in Immunology (sp) because of the symptoms I have. They gave me

three names. They are also sending me a packet of information. I thank God

for this group. I may be able to get the answers I have been needed for six

years.

Dawn McReynolds

Aurora Women's Center, Inc.

Headquarters

19946 Harper

Harper Woods, MI

48225

Located in the Salvation Army Building

24140 Mound

Warren, MI 48091

_____

From: W4JC@...

Sent: Thursday, June 24, 2004 12:39 PM

To: iga-nephropathy

Subject: Re: I have some questions

Hi Dawn,

Do you know what your creatinine level is? I ask because your kidneys make

a

hormone called erythropoietin, and it is the hormone that tells your long

bones to make red blood cells. If your renal function has declined enough

that

you no longer make enough hormone, taking iron alone will not correct the

anemia.

Losing blood in your urine is not enough to cause anemia. The cause of

renal

induced anemia is the lack of hormone and if that is what is happening to

you, you would need Epogen injections to correct the problem.

Your Neph's comments about if you were going to progress you would have

already done so astounds me. There are many of us who have had IgAN 20+

years and

are just now looking at ESRD. I have had IgAN since my teens, and now

nearly

30 years later I am down to 20%. IgAN does require regular monitoring. If

you have good function, perhaps once or twice a year is sufficient, but if

you

are more progressed, more frequent monitoring is required.

June 25, 2004