new member

[Guest guest]

Hi Shirley,

Welcome to our group. I am sorry that you had to get a diagnosis of IgAN to

join our ranks, but I do hope you will find a tremendous amount of support

here.

I think Pierre did an excellent job of answering your questions. There

really is no way to absolutely predict the point where you will enter into

ESRD. The inverse plotter is what my Neph uses to guesstimate, so that is a

great tool. You may want to contact your Neph and see if you can get your

lab results for Serum Creatinine over the past few years and plot it out.

Like Pierre, I have had IgAN for well over 20 years having symptoms as far

back as the mid 70s. My inverse plotter estimates that my kidneys will fail

late 03 or early 04, so I probably have about a year left.

Welcome again, and I hope you find this site and <A

HREF= " www.igan.ca " >www.igan.ca</A> to be most

informative.

[Guest guest]

Hi Shirley.

Since you've already been around for a while, a belated welcome to the

group.

The BP starting to go high after 5-10 years or so is pretty typical of IgAN.

It's impossible to tell from serum creatinine alone how long it will take to

reach any stage though. For example, I was at 2.5 sometime in 1997-98, and I

only reached 5 during this past summer. So that was 4-5 years, but that's

just me. Generally, what happens is that when your serum creatinine passes

2.0-2.5, it will likely keep getting worse due to both the IgAN, and to the

good nephrons compensating for the bad ones and getting overworked.. But

it's not possible to say when. At that point, you may already have passed

the point of no return - but you could still be years away from end-stage.

It depends on how fast or slow you are progressing. In order to estimate

approximately when you might run out of kidney function, you need serum

creatinine numbers over a long period of time (I would say at least a year,

but longer is better), and you plot them on what is called an inverse

creatinine plot. The point when creatinine clearance or GFR reaches 10 to 15

is when you might expect to reach end-stage renal failure and need either

dialysis or a kidney transplant. However, the plot is not perfect, because

serum creatinine can be artificially raised by blood pressure medications

and diuretics at various times, and usually, the downhill course accelerates

as you get closer to end stage. Again, as an example, I had IgAN for 25

years at least, and as late as this past July, I still could not have

predicted that I would be on dialysis by October. I still looked pretty

stable as late as June even. So, let's hope you still have many years to go.

If you're interested in plotting it out, you can find a great inverse

creatinine plotting tool at:

http://www.wramc.amedd.army.mil/departments/medicine/nephrology/tools/index.

html

To be honest though, 2 grams/day of protein in your urine isn't going to

help. The leaking protein itself tends to damage the renal tubules (which

are part of the filtration units called nephrons). It may help to slow

things down if you can keep the blood pressure under good control with any

of the drugs from the ACE inhibitor class, or alternatively, the angiotensin

II receptor blocker class. I would assume you are already on one of these,

but if the BP control is not optimal, your nephrologist may consider

increasing the dose. In addition to lowering the blood pressure, that helps

to lower that proteinuria.

I don't know what tingling in your back might be. I've never heard of that

in connection with IgAN. I can't think of anything in there associated with

the kidneys that might tingle.

Pierre

New Member

> Hi my name is Shirley! I joined your support group last week. I

> have learned a lot from reading all the emails.

> I was diagonosed with IGA 8 years ago. I was holding all my levels

> until a year ago when my bp starting getting bad. My neph. just

> called me last week to tell me that my creat is now 2.5 and 2grams of

> protein was found in the 24 hr urine. My family doctor told me that

> once you hit the 2.5 creatinine level the level can go to 5.0

> quickly. Does anyone know how quickly, months or years?

> I was also wondering does anyone get a tingling feeling your back? I

> have been getting this more and more lately and when I brought it up

> to my neph. he didn't seem like that was a normal feeling I should be

> having and said don't worry about it.

> Regards,

> Shirley

>

>

>

>

> 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

>

>

[Guest guest]

Hi C,

Welcome to the group. I think that is great that you have a sister waiting

in the wings for you! That is truly a blessing. How are you feeling with a

creatinine of 4.1? I do hope you are not afflicted with the fatigue that so

many of us seem to be plagued with. We do warmly welcome you and look

forward to supporting and encouraging you along the way.

[Guest guest]

Welcome to the group .

Always nice to hear from another long-time IgANer. Let's hope your current

doctors are right about another 3-5 years. My nephrologist said 18 months,

and 17 months later, I started dialysis. Of course, it took 25 years to get

there.

Pierre

new member

> Hello to all the members of this user group. The other group that I have

been a member of has been quite quiet and I do like to see some movement in

a group.

>

> My situation is similar to most in the group. I was Diagnosed about 20

years ago and have progressed to a creatnine of 4.1 with a weight of 170.

About 3 years ago my first Nephrologists told me to start looking at my

family for a donor. I have done so. I have one sister that looks like she

will be a fit and is healthy. (She is 64) That Doctor said that he thought

that I would need a kidney within the next 18 months, so I have gone beyond

that prediction. My present doctors say that it could be another 3 to 5

years, so I feel blessed in that.

>

> I thank you, Pierre, for starting this group and to all of you who are on

my other group for putting me onto this group. Since ther is already a

Sally in the group, I will introduce myself by my baptised name not my

called name.

>

> Looking forward to getting to know this group. C.

>

>

>

[Guest guest]

Hi

Welcome to the group, they are a cheery and supportive lot here! I'm

fairly new too, by the way...

I had some wheezing and difficulty breathing when I was first ill( I

first went into hospital in July with severe swelling and breathing

difficulties, and was diagnosed iga a few weeks later). At the time,

this was due to pulmanory edema, when fluid had built up in my lungs

because I'd been sweeling for a while untreated. This was rapidly

sorted with rest and diuretics. The wheezing then was very

distinctive, it sounded like crackling and gurgling when lying down,

and didn't sound like anything else I'd heard. Do you have edema

(swelling) on your ankles or anywhere else? What's your protien

figures like? Do you have a 24hr figure?

I don't think that protien increase always means the 'disease' has

increased...could just be an acute episode, some have many over the

years, but the general course of the disease for them is fairly

benign. Have you been told to go on a low protien diet? I don't know

any, I'm afraid, apart from not eating the best bit's of every meal!

Sorry...!

Hope that helps a little...

all the best,

Cambridge, UK

> Hello: I have just joined your group. I have been recently dx

with

> IGA last March... I am on a blood pressure medicine (which I seem

to

> be increasing everytime I visit my neph/md) I was just wondering

has

> anyone experienced any type of wheezing symptoms.. I have never

been

> told I have asthma... I was just wondering if it could be related?

> Also, my other question is: My protein level seems to keep

> increasing which I know means the disease is increasing..

> Does anybody have any good low protein diets ???

>

> Thanks in advance for your help...

> Hope to talk to you all soon..

>

[Guest guest]

, Did your wheezing start after you started your medication? If so, I

would contact your Doctor, because many of the warnings on my blood

pressures pills state various side effects and that " difficulty breathing "

should be reported to your Doctor.

I am short of breath sometimes and I don't know if it is related to the

medications or the IgAN. I've had pulmonary testing done and it always

comes back normal, so I've always suspected that the meds are causing my

problems with the shortness of breath. Pierre, any thoughts or comments

here? Connie, USA

New Member

Hello: I have just joined your group. I have been recently dx with

IGA last March... I am on a blood pressure medicine (which I seem to

be increasing everytime I visit my neph/md) I was just wondering has

anyone experienced any type of wheezing symptoms.. I have never been

told I have asthma... I was just wondering if it could be related?

Also, my other question is: My protein level seems to keep

increasing which I know means the disease is increasing..

Does anybody have any good low protein diets ???

Thanks in advance for your help...

Hope to talk to you all soon..

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

[Guest guest]

With respect, I don't think the jury is still out on anti-

inflammatory medication and IgA. There are nephrologists out there---

leaders in the field---who believe that drugs like Prednisolone can

delay or prevent the progression of IgA in a material number of

patients. Does it work for everyone? No. But, it works for enough

people that some nephs are strong believers. My neph showed me some

recent Italian research (apologies, I can't point you to a reference,

maybe someone else here knows) that showed a measurably slower

progression of IgA in the group using corticosteriods than in the

control.

There is still so much about this disease that is unknown; we all

need to keep an open mind.

> Dear First message >upper thirties,

>

> There are some things that some Doctors do to try to help with the

disease, but the most important advice from a Doc. that I have gotten

is to not use any anti-inflammatory meds. They are correct, don't do

it!!!! They process through the kidneys and will tear at an already

sick organ. From what I have seen you can try the different

suggestions form your physician, but the don't do's are the most

important. There may be a cure for this one day, but not now. The

only meds that I have used are meds that are in reaction to what the

kidneys are doing to me. Higher cholesterol, higher BP, and

fatigue. But, what I have said does not mean that you ignore a

suggested treatment of your Doc. I have tried all treatments

suggested because the doc. has said that it may (big may) help slow

down the progression of the disease. Be sure you go to your doctor

regularly and keep up with what is going on with your body.

>

> AND LIVE ON. Do what you can and then live your life. We are only

here for so long and then we are gone no matter what is wrong with

us. If you find yourself focusing too much on your disease, make

sure that you are not getting depressed. If you are seek help. This

chronic disease living can get to you. Not only can the disease hurt

your body, but living with it can hurt you mind. You can do

something about that. I will not let this disease do that to me. I

take a very mild antidepressant religiously. For me, it makes this

disease easier to deal with and makes me easier for my family and

friends to live with me!

> Re: new member

>

>

> Pierre,

>

> This is my first message and I don't know quite where to start. I

have been

> reading messages for a few days and am impressed with the

knowledge being

> shared.

>

> I have was diagnosed a year ago and am a female (shall we say in

my late

> thirties)

> I have always been healthy and active untill about two years ago

when I began

> to feel tired. followed by episode of gross hematuria, biopsy,

and a

> diagnoses.

>

> At first I had no protein but within the last six months it has

gone from

> trace to 30+ on a dip stick. blood in the urine is almost always

visible.

> My neph only says that statistically it is unlikely that it will

progress.

> He predicted that after the first episode that all hematuria

would disappear

> and would never happen again.

>

> My question to you is if you could go back to the time of your

diagnoses what

> would you have liked to have done different? I don't won't to

look back and

> think if only I had done something different.

>

> On a side note, I read some of the messages about the cost of

neph. Well, I

> have been taken for a ride. My last visit was 400 US dollars.

just for a

> five minute office visit. labs were seperate. and he is not

even cute.

>

> I look forward to hearing from you.

>

>

>

[Guest guest]

Nick,

I think smustard was referring the non-steroidal anti-inflammatories, not

oral steroids. I'm sure nobody here would argue that prednisone and its

cousin prednisolone don't have a place in treatment of IgAN.

Pierre

Re: new member

> With respect, I don't think the jury is still out on anti-

> inflammatory medication and IgA. There are nephrologists out there---

> leaders in the field---who believe that drugs like Prednisolone can

> delay or prevent the progression of IgA in a material number of

> patients. Does it work for everyone? No. But, it works for enough

> people that some nephs are strong believers. My neph showed me some

> recent Italian research (apologies, I can't point you to a reference,

> maybe someone else here knows) that showed a measurably slower

> progression of IgA in the group using corticosteriods than in the

> control.

>

> There is still so much about this disease that is unknown; we all

> need to keep an open mind.

>

>

>

> > Dear First message >upper thirties,

> >

> > There are some things that some Doctors do to try to help with the

> disease, but the most important advice from a Doc. that I have gotten

> is to not use any anti-inflammatory meds. They are correct, don't do

> it!!!! They process through the kidneys and will tear at an already

> sick organ. From what I have seen you can try the different

> suggestions form your physician, but the don't do's are the most

> important. There may be a cure for this one day, but not now. The

> only meds that I have used are meds that are in reaction to what the

> kidneys are doing to me. Higher cholesterol, higher BP, and

> fatigue. But, what I have said does not mean that you ignore a

> suggested treatment of your Doc. I have tried all treatments

> suggested because the doc. has said that it may (big may) help slow

> down the progression of the disease. Be sure you go to your doctor

> regularly and keep up with what is going on with your body.

> >

> > AND LIVE ON. Do what you can and then live your life. We are only

> here for so long and then we are gone no matter what is wrong with

> us. If you find yourself focusing too much on your disease, make

> sure that you are not getting depressed. If you are seek help. This

> chronic disease living can get to you. Not only can the disease hurt

> your body, but living with it can hurt you mind. You can do

> something about that. I will not let this disease do that to me. I

> take a very mild antidepressant religiously. For me, it makes this

> disease easier to deal with and makes me easier for my family and

> friends to live with me!

[Guest guest]

I was talking about Ibuprofen, asperine and those sorts of things. I know that

I was going through a period of headaches where I took some of my husbands

Ibuprofen because the Tylonol would not thouch them and on my next visit, my

creatnine had done a big jump.

Re: new member

>

>

> Pierre,

>

> This is my first message and I don't know quite where to start. I

have been

> reading messages for a few days and am impressed with the

knowledge being

> shared.

>

> I have was diagnosed a year ago and am a female (shall we say in

my late

> thirties)

> I have always been healthy and active untill about two years ago

when I began

> to feel tired. followed by episode of gross hematuria, biopsy,

and a

> diagnoses.

>

> At first I had no protein but within the last six months it has

gone from

> trace to 30+ on a dip stick. blood in the urine is almost always

visible.

> My neph only says that statistically it is unlikely that it will

progress.

> He predicted that after the first episode that all hematuria

would disappear

> and would never happen again.

>

> My question to you is if you could go back to the time of your

diagnoses what

> would you have liked to have done different? I don't won't to

look back and

> think if only I had done something different.

>

> On a side note, I read some of the messages about the cost of

neph. Well, I

> have been taken for a ride. My last visit was 400 US dollars.

just for a

> five minute office visit. labs were seperate. and he is not

even cute.

>

> I look forward to hearing from you.

>

>

>

[Guest guest]

Avoiding ground pounding activities like jogging may actually help in

reducing both blood and protein in the urine. Walking is a great exercise. I

like cycling myself.

Pierre

Re: new member

> thanks so much for your prompt response. It helps to now there is someone

> there.

>

> yes, the blood is almost always visible from pink to brick red. The neph

> says that it does not indicate anything. I did quit jogging which seemed

to

> help. I have had one twenty four hour urine which showed less than half a

> gram. crit is 1.2

>

> I have always had really low blood pressure so I am really optomistic

about

> that. It only occasionally makes it up to normal. I am taking an ace

> inhibitor.

>

> Perhaps what I need is not a nephrologist but a fortune teller. That

would

> make things much easier. Untill then I will just have to wait. My next

> appt.is in feb.

>

>

>

>

[Guest guest]

Welcome to the group, Elsie. I've been on rocaltrol for 2 years now, without

any problems, but we're all different in our responses to medications.

You or your Imac must be doing something wrong with the walter reed graph.

With numbers you're at now, and having been prescribe Rocaltrol, if you are

progressing in chronic renal failure (as it appears), I think end-stage

would be reached before 2022.

On the other hand, you case does seem unusual. Very few people with a serum

creatinine in the area of 2.0 would need to take potassium supplements, and

on top of that, be prescribed a potassium-sparing diuretic

(triamterene/hctz), which increases potassium. Most people have the opposite

problem by that time.

I'm glad you find the group useful.

Pierre

P.S. I liked Edmonton during the time I was stationed at CFB Cold Lake.

Spent many weekends there - as a much younger man than now : )

new member

> hello ...i have been monitoring this site for a few months..when i

> found you my blood pressure dropped 10 pts. i was dx about 2

> years ago on a routine work physical with microblood in

> urine.could not find any info on the net.just some very general

> items.til i came across this wonderful group.through your

> postings you have answered almost all my questions.i saw the

> neph last feb and don't see him til next feb.i was in his office all

> of 2 minutes.All he said was to not eat red meat but put me on

> nephrocaps and potassium.he also put me on rocalcitrol? but

> had to stop as was allergic .also highy allergic to ace inhibitors.

> am on nephrocaps-b's

> plendil 10mg

> atenolol 50 mg

> potassium 10 meq

> triamterene/hctz 75/50---1/2 tab

> oxazepam 15 mg (for sleep)

> i have tried plotting on the walter reed graph..but am not sure i'm

> doing this correctly as i plotted it out the year 2022? can this be?

> have a new computer and just learning all this as well. its an

> imac and it won't print my plotting of the chart.i just get a blank

> space on printout..at any rate if someone would be good to plot

> the fol;

> NOV-2000

> creat 2.0

> bun/creat (10.-28.) 11.5

> ?creatinine(24 hr) (.5-1.6 ) .90

> protein -urine (25-150) 425

> feb-2001

> bun34

> creat 2.1

> uric acid (2.7-6.6) 8.3

> aug-2001

> serum creat 2.7

> creat cl 22

> ?protein 24 hr<150 55

> feb 2002

> bun 26

> creatinine 1.8

> pth 145

> i'm going to be 70 next mo. am female at about 115 lbs about

> 4'10 " . am originally from edmonton alberta.....miss the lilacs and

> oh those saskatoons but am now living in southern california.

> again....this is a wonderful site pierre et al...thanks for being

> there......elsie

> thank you all.

>

>

> 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

>

>

[Guest guest]

> Laila, mother to Louai, 4.2 ASD, approximately 3 months SCD and

> Ouidad, 2.5 NT

> The Netherlands

Ok Guys, forgive me, this is between us Dutch moms, just this

once... ;-)) SOO good to see her here...

Hoi Laila,

geweldig om je hier te zien! Ik zit te puzzelen wanneer ik weer in

Amsterdam ben, maar voorlopig lijkt het erop dat vervoer van mijn

kleinste zoontje voor ons geregeld wordt (familie heen & weer etc).

Zodra ik ga, wip ik bij je langs.

Marjan

[Guest guest]

Hi Judy!!

Glad you to see here :-) You will find LOTS of help and ideas for the

SCD.

You make five of 'us' now.. Though we are all in this together despite

the reasons why. :-)

Carol in IL

ps127@...

Mom to 7 blessings including , 3 with DS (SCD8 weeks ) and

Grandma to Micah and Jonah.

" Unless the Lord builds the house, they labor in vain. " Psalm 127

My problem isn't how I look, is how you see me. "

[Guest guest]

Thanks

You have been a lot of help! I will check it out and talk with my

son's doctor.

thanks again!

Judy

> My whole family has been SCD since the beginning of this month. I

> have 4 kids. My youngest is a 2 1/2 year old boy who has celiac

> disease. My next boy is 4 1/2 and is autistic and celiac. My

> daughter is 10 and typically developing. My oldest son is 12 and

> typically developing though I suspect a bit Aspergers. I have

> homeschooled my older 2 since Kindergarden however my autistic son

is

> in a special needs preschool through the public school system. He

> has been on the gluten-free, casein-free diet for 2 years with

good

> results before I have switched him to the SCD diet.

> Did you know that celiac disease is fairly common among down

> syndrome? The distended belly you mention could be an indication

of

> it. If so, you are in the right place.

> I have had my autistic son tested for metals. He was extremely

high

> in antimony and cadmium. His test was done through Doctors Data

Inc

> (http://www.doctorsdata.com/). This has to be done with a

doctor's

> signature though. You can find a wealth of information about

metals

> and testing at the yahoo group AutismandMercury. In the files

> section there is information about testing and how to do it

without a

> doctor. The most accurate testing is by hair since it shows a

> history as opposed to blood which will only show recent exposure.

I

> tried chelation for my son and saw some improvement however he got

> horrible yeast problems after each round. I decided to deal with

the

> yeast and try chelation again in the future.

>

>

>

[Guest guest]

Hi

I am a new member here. I have been reading a lot before I posted.

I just got the BTVC book for xmas, it was ordered for me and just came in so i

can pick it up tomorrow......I have been studying the web sites for some time

and now feel ready to move forward.

Anyway....

I have a 3 yr old son with Down Syndrome who also happens to be deaf so his

language delay is paramount. I do not know if he has gut issues except that his

tummy is almost always bloated but he usually has no problems going to the

bathroom. He is on a heavy yogurt diet (organic yogurt) but I am going to buy a

yogurt machine and make my own goat yogurt. I have my own goats and just got one

that is a milk goat that is used to being milked... wish me luck!

has had all of his vaccines although none of them contained thymerisol,

but I still worry what metal levels he might have.

I would like for someone to email me privatly and let me know more about the

process of detecting the metal levels and what to do about it, where to go for

detox, etc. I would also have my 9 yr old sone tested. he had all of his shots

and they did contain the thymerisol. He is not diagnosed with anything but I

would strongly suspect a mild case of adhd.

I also have a nephew who has aspergers sysndrome and I am trying to help my

sister to learn about this for her kids.

thanks!

Judy

Judy and Randy Saxon

Howey in the hills, Fl

Mom to: (9, homeschooled) and 3yrs old.(DS;moderate- Severe hearing

loss, bicuspid aortic valve ) go to 's Page:

http://home.earthlink.net/~1blueapple