Re: new member

Posted February 27, 2000 · February 27, 2000

In a message dated 2/27/00 9:12:48 AM Eastern Standard Time,

mrmonte@... writes:

<< WOW.......poor Russ........he is going to be in some kinda pain trying

not to laugh.......hehehe while you are visiting......put a kink in his

morphine tube.......lol

and they thought I was evil. Good thinking!! Russ I hope you are reading

these. This will teach you to pick on me and Annie

Jo

>>

as long as i have such a wonderful angels like you and Carla I, i will have

no pain........ i cant believe i said that with a straight face

Posted March 6, 2000 · March 6, 2000

Thanks Lyssa, Got it......didnt check mail yesterday...so I welcomed them!

LOL!

((hugs )) Carla

Posted October 25, 2000 · October 25, 2000

Hi chgb.

Until recently, I was the junior member, which meant I had to get the

coffee ready in the morning, turn the lights in the club out at

night, and let the cat out before locking up. It is with great

pleasure that I pass all these duties on to you.

Seriously, I'm 45, married, with 3 children and 1 disease, DM. The

other people here are very friendly and knowledgeable, so please ask

them anything you want -- you'll get a really quick and helpful

response.

Mike B

Posted January 12, 2001 · January 12, 2001

Hi :-)

When new people sign on I generally suggest to them to try what is working

for me.....

I have had DM since August of '96 and am doing very well on the antibiotic

therapy. If you are interested, it is definitely worth looking into and

nudging your doctor.....or finding another if you need to. Look at

www.rheumatic.org www.roadback.org and www.immed.org to start with (lots

to read!) There is a lot more to tell you, but I'll save it for now as I'm

running out the door in a minute.

Also, if you can, read Henry Scammell's book called The New Arthritis

Breakthrough. There are lots of stories about very real people.....some of

whom I have even met!

take care and let me know what you think and how you are doing, OK? You do

not have to continue to suffer.....not every one knows about or uses the

antibiotic therapy, but the one's who do and have the correct information,

do very well on it.

Connie Hache

call if you like, 509 943-6137

New Member

> Hi Everybody:

>

> My name is , I am 29 years old and was diagnosed with DM in

> June 2000. I have been off work since that time and have had quite a

> time learning to live with the disease. I am on Prednisone and

> Methotrexate (along with a few others). I had an awful time with the

> Prednisone - my highest dose was 60mg/day - I gained a ton of weight

> as well as suffered from most common side effects and now with the

> addition of Methotrexate, I am losing my hair. Needless to say,

> besides feeling blah because of the disease, I don't feel liike I am

> very attractive anymore (my husband, bless him, has been wonderful).

>

> To me, 8 months has been long enough to be sick and I would love to

> hear that I am going to be better soon! It is hard for me when I

> feel I have to explain my illness to people - to look at me I don't

> look that ill. I get so frustrated when I try to do something and

> get too tired, to the point where I can't be bothered to try anything

> else.

>

> Any words of encouragement, or even to hear that others are or have

> gone though the same thing would be helpful - I am 1 of 2 patients

> that my doctor has with this condition and he is not the fuzziest of

> people!

>

> Looking forward to hearing back from you.

>

Posted January 12, 2001 · January 12, 2001

You sound exactly like me !!! I am 39 and was dx in April of 2000 and just returned to work last week after 8 months of disability. I understand where you are coming from exactly. I, like you, am on pred and meth. I started at 60 mg/day of pred and am now at 7. My meth is at 20 mg/week now. I too have suffered (as we all have) from the wonderful effects of pred (weight gain) and have also been given the hair loss from the meth. I find that my hair grows much faster but unfortunately is much thinner than it was last April !!! My wonderful hairdresser thought he was doing me a favor last June and gave me a boy-cut to make my life easier but I looked like something out of a freak show !!! Hair that short just didnt look right on a bowling ball head !!! Thanks to the pred, my hair is now to my shoulders and I have an appointment to get a TRIM at the end of the month. As far as the weight goes, I could open my own clothing shop as I now am the proud owner of everything from a size 4 to a size 16 !!! I REFUSE to give up my clothes as I WILL wear them again in the near future if it is the last thing I do. If you cant tell, I am very head strong and I think this disease has accentuated that even more !!! I refuse to let it get the best of me and try my best to find good in each day along with humor. It truly helps !!! Yes, I do have days where I get depressed and extremely bitchy but I try to end each day on a good note and make the next one better. This group has also been a great support line and I hope you enjoy being a part of it. The information and conversation is essential and uplifting !!! Welcome !!!

Posted January 12, 2001 · January 12, 2001

Hi .

I'm a DMer as well, diagnosed only two months before you. My highest

prednisone dose was also 60 mg/day, and I'm now down to 10. I don't

take meth, but I am getting plaquenil.

What I found very helpful was reading the old messages on this board.

I got to learn who was who -- pardon the English -- and also found an

awful lot of very good web addresses I could search for more

information on my little problem.

Things do get better as the prednisone is reduced. Your hair starts

to grow back -- but I hope you like silver! And you will start to get

your strength back.

Being very junior here (in terms of the disease only, since I am 45)

I hesitate to give much advice, but the one thing I would suggest is

that you do as much physiotherapy as your doctor will let you do, as

soon as your doctor lets you. I think you have to be very careful to

not overdo things, but if you don't push just a little bit you are

not going to make the best recovery you otherwise could.

The other thing I have noticed here is that Vicki does know a lot

about nearly everything. The only things she has problems with are

recipes for cookies.

Take care.

Mike B

Posted January 13, 2001 · January 13, 2001

Hi ,

I was 31 when dx with PM and I can tell you there are

times when you feel better. Hang in there. Big hug.

Jules.

--- wrote:

> Hi Everybody:

>

> My name is , I am 29 years old and was

> diagnosed with DM in

> June 2000. I have been off work since that time and

> have had quite a

> time learning to live with the disease. I am on

> Prednisone and

> Methotrexate (along with a few others). I had an

> awful time with the

> Prednisone - my highest dose was 60mg/day - I gained

> a ton of weight

> as well as suffered from most common side effects

> and now with the

> addition of Methotrexate, I am losing my hair.

> Needless to say,

> besides feeling blah because of the disease, I don't

> feel liike I am

> very attractive anymore (my husband, bless him, has

> been wonderful).

>

> To me, 8 months has been long enough to be sick and

> I would love to

> hear that I am going to be better soon! It is hard

> for me when I

> feel I have to explain my illness to people - to

> look at me I don't

> look that ill. I get so frustrated when I try to do

> something and

> get too tired, to the point where I can't be

> bothered to try anything

> else.

>

> Any words of encouragement, or even to hear that

> others are or have

> gone though the same thing would be helpful - I am 1

> of 2 patients

> that my doctor has with this condition and he is not

> the fuzziest of

> people!

>

> Looking forward to hearing back from you.

>

__________________________________________________

Posted January 25, 2003 · January 25, 2003

Leonie

Thank you very much for posting this excellent message, I couldn't have

written it better myself. I love it when the group interacts like this,

makes me feel sort of warm and glowy. Thanks again.

new member

Hi I'm a new member.

My name is and I live in Ontario. I was diagnosed with Iga

type 2 in November. I've been very ill since being pregnant with my

21 month old son. The doctors originally thought it was eclampsia

and that it would go away shortly after his birth. My blood pressure

did slowly get better (with mild medication) but I kept up with large

blood and high protein in my urine for a year. No one seemed alarmed

at that and I was told time and again that some people present with

that but are free of disease. Then in July of 2002 my blood pressure

started to creep up again. My GP caught at a routine physical and

said to come back after our month long vacation at our cottage to

have it re checked. By that time I was extremely fatiqued, nauseous,

my mother who is a nurse was alarmed checked my blood pressure found

it to be 190/120. I went into my GP he gave me fast acting drugs to

bring down my blood pressure and a mild maintenance drug and refered

me to an internal medicine specializing in women's health. By the

time that appointment came up I was having blinding headaches nauseau

and extreme fatique. My blood pressure had changed to 165/138 again

unfortunately it took him almost two months for kidney disease to

occur to him. It would have taken probably longer but one day I was

so ill my mother just packed me into the car and rushed me to emerg.

The dr's there quickly determined a 35 year old female who prior to

this pregnacy rode her bike every day, excercised, had two older

children should not have blood pressure like that ordered a battery

of tests and had me in to see a nephrologist the next day.

She has been wonderful gave me some serious drugs to reduce the

blood pressure they work i feel much better, started me on fish oil,

HCT, iron, did a biopsy. She has also ordered a 48 hr harness, ECCO

and a CAT of my brain because of other symptons I presented with and

because of the excessively high and prolonged blood pressure

problems. I have already had these tests and get the results on

Tuesday.

Sorry about the length of this introduction but I almost needed to

see it written out for me too. Due to the three children I only get

online every few days but I would love to hear from any who have time.

Posted January 25, 2003 · January 25, 2003

Leonie

Thank you for returning the message I hope to find that I am not

rapidly progressing. The dr said from these tests over 4 months she

should begin to have enough markers to give me an idea about that. I

think like everyone I can deal with whatever it is as long as I have

the information to make knowledgable decisions and feel somewhat in

control of this disease. My middle child is diabetic and has been

for years so I'm experienced in handling chronic illness with

medications and sudden flare ups, he has taught me alot in watching

him be strong while still just a child.

- In iga-nephropathy , " Mark & Leonie " <leemar@b...>

wrote:

> Hi , I am glad you found this support group, it is

wonderful. A

> lot does go on so you will need to file things for when the time

comes

> that you may find some topics more relevant to your circumstances.

Any

> emails you post, you will get a response to.

> I am 30 and was diagnosed in September 2002 as a result of killer

> migraines which I had never had before. After prescribing migraine

> treatment he finally discovered the high BP (240/180). My proper Dr

was

> not available until visit 3 in one week which is why it took a

while. He

> flipped, I could see the fear in his eyes (just as I was vomiting

into a

> bowl they gave me in the Dr's). He thought I was going to have a

stroke.

> He sent me home with strict supervision and a letter for the

hospital if

> nothing improved within hours. Eventually he had me on BP tablets

then

> nothing, just told me to lose some weight and it would get better.

FOOL.

> Finally I had some blood tests done for some other surgery and

BANG, my

> life was never to be the same again.

>

> Anyway, it's not so bad, don't panic. You can still raise your

children

> and lead a happy life. Depending on your stage (and everyone is

> completely different) you may not experience any further life

altering

> events. I hope this happens for you and the rest of us, but I

personally

> wouldn't bet on it. Eventually, I will reach failure and require

> Dialysis, which doesn't seem so bad, life altering again and a

bloomin

> inconvenience but still survival.

>

> Good luck,

> Leonie (Sydney, Australia)

>

> new member

>

> Hi I'm a new member.

>

> My name is and I live in Ontario. I was diagnosed with

Iga

> type 2 in November. I've been very ill since being pregnant with

my

> 21 month old son. The doctors originally thought it was eclampsia

> and that it would go away shortly after his birth. My blood

pressure

> did slowly get better (with mild medication) but I kept up with

large

> blood and high protein in my urine for a year. No one seemed

alarmed

> at that and I was told time and again that some people present with

> that but are free of disease. Then in July of 2002 my blood

pressure

> started to creep up again. My GP caught at a routine physical and

> said to come back after our month long vacation at our cottage to

> have it re checked. By that time I was extremely fatiqued,

nauseous,

> my mother who is a nurse was alarmed checked my blood pressure

found

> it to be 190/120. I went into my GP he gave me fast acting drugs

to

> bring down my blood pressure and a mild maintenance drug and

refered

> me to an internal medicine specializing in women's health. By the

> time that appointment came up I was having blinding headaches

nauseau

> and extreme fatique. My blood pressure had changed to 165/138

again

> unfortunately it took him almost two months for kidney disease to

> occur to him. It would have taken probably longer but one day I

was

> so ill my mother just packed me into the car and rushed me to

emerg.

> The dr's there quickly determined a 35 year old female who prior to

> this pregnacy rode her bike every day, excercised, had two older

> children should not have blood pressure like that ordered a battery

> of tests and had me in to see a nephrologist the next day.

> She has been wonderful gave me some serious drugs to reduce the

> blood pressure they work i feel much better, started me on fish

oil,

> HCT, iron, did a biopsy. She has also ordered a 48 hr harness,

ECCO

> and a CAT of my brain because of other symptons I presented with

and

> because of the excessively high and prolonged blood pressure

> problems. I have already had these tests and get the results on

> Tuesday.

> Sorry about the length of this introduction but I almost needed

to

> see it written out for me too. Due to the three children I only get

> online every few days but I would love to hear from any who have

time.

>

Posted January 25, 2003 · January 25, 2003

Walter

Thank you for responding to my email. I live in southwestern Ontario

a community called London pop about 400,000 about 2hrs from Toronto.

Fortunately London is home to The University of Western Ontario and

some of the greatest teaching hospistals in Canada.

> :

>

> Welcome to the group. I hope that you receive good results on

> Tuesday morning, so that you can be set at ease regarding the

> progression of this disease.

>

> The symptoms that you describe that caused your mother to take you

> to the doctor seem very similar to mine -- I also was experiencing

> blinding headaches from the high BP, and was diagnosed within a

> couple of weeks after first seeing the doctor.

>

> It's probably very difficult to handle this at this point in your

> life, given the little one that you are now responsible for.

>

> The only thing I can tell you is that now, just a little over two

> years into this disease, I'm once again reasonably healthy, and

able

> to do some of the things that I really like to do. On the other

> hand, I do have to plan out strenous exercise around the medicines

> that I take, and that I do feel more tired in the morning, but

other

> than those small things, I feel like I have better overall health

> than any time in the last couple of years.

>

> We hope that this group can provide you with some good advice as

you

> start down this path...

>

> Walt

>

> P.S. I worked with a company that had staff in London, Ontario for

> a couple of years -- are you from eastern, western, or northern

> Ontario?

Posted January 25, 2003 · January 25, 2003

:

You are indeed lucky to be in London -- great University and

Hospital. Hopefully, you'll get a very good nephrologist that will

be up on the latest research -- it really helps to be near a

teaching institution.

I'm quite familiar with UWO -- my old office was in the UWO Research

Park. Used to stay at the Windmere Hotel at the University. I

really enjoyed the town, and have many good friends still there.

Walt

Posted March 15, 2003 · March 15, 2003

Welcome to the group, and thanks for the nice comment.

I've been on Cozaar off and on a number of times. They just put me back on

it a few months ago, after I had started dialysis. It won't bother your BP

too much if you don't already have high BP, but it may help extend the life

of your kidneys. They give these drugs even to people who've had a kidney

transplant nowadays, for that same reason.

About the renal diet. I think you are starting early because you only have

one kidney left. The inconclusive aspect of it is that low protein may not

necessarily keep kidney failure away. Not much we can do about that one. But

what it will do is minimize the symptoms of chronic renal failure while you

wait. So either way, it's the thing to do. Keeping phosphorus down will

definitely help prevent any bone problems, and as such, it gives you a good

head start on bone health for when you do reach the dialysis stage. There's

not a heck of a lot we can put in our favour, but diet is one thing we can

do that gives us a bit of control.

LOL. If you think keeping protein intake down is hard now, you should see

how hard it is to keep it UP. Once on dialysis, it's almost impossible to

eat all the meat protein they want you to eat on a daily basis. Despite my

best efforts, every time, after monthly blood work, they tell me I'm not

eating enough protein!

Good luck.

Pierre

New Member

> Hello: I'm new to the group. Oct 2000 I lost my right kidney to

> renal cell carcinoma. Now I have been diagnosed with iga-n.

> Last check I had 1.7 H in Creatine level, not bad I think. They

> put me on that dreaded low protein diet which I am struggling with

> very bad. My Neph prescribed me Cozzar, which is blood presure

> medicine even though I have great blood presure. I am only 36 years

> old. I really wonder how much this diet will help. My Neph said that

> millions of dollars went into research this diet to see if helps and

> the conclusion is in-conlusive. Any way I hope to feed off of

> everyones experience and then hope to help others in my experience.

>

> Thank you Pierre for a great site to see others experience so that

> we don't have to feel alone which I read you did for so long.

>

Posted March 15, 2003 · March 15, 2003

Hi Gordon,

Welcome to our group! I am glad you found us so you know there are others

who understand exactly what you are going through and can support you through

it.

The blood pressure medicine your doctor gave you is because they tend to have

a renal protective measure to protect the kidney function you have. You

certainly did get a double whammy with renal carcinoma and now IgAN. I am

very sorry about your diagnosis.

I think on the low protein diet, it is very common and I too have been on a

low protein diet for years. Thank you so much for posting the links for

information on renal diets. Those always help.

As far as your sense of humor, I am a firm believer in the ability to laugh

and keep a positive outlook. I know your doctor says you will definitely be

on dialysis, but the facts are the majority of people with IgAN never do end

up on dialysis, so who knows! I have had IgAN since I was a teen, and I am

in my 40s now and still not on dialysis.

I hope you find lots of encouragement here, and we do welcome you

wholeheartedly!

Posted March 29, 2003 · March 29, 2003

Hi Ted.

Welcome.

The serum creatinine level at which dialysis is needed depends on the

individual and his/her muscle mass. In U.S. numbers, it can be anywhere from

5 to 10. It's more accurate to look at Glomerular Filtration Rate (GFR),

which is the same thing as percentage kidney function. Your nephrologist

should be able to tell you what yours is. Dialysis is needed more or less

when that reachs 10 ml/min. Unlike serum creatinine, GFR doesn't very by

muscle mass, in the sense that the number they give you is what it is.

Creatinine clearance from a 24 hour urine collection is roughly equivalent

to GFR. You can get a very rough idea of yours by using the MDRD GFR

calculator at:

http://nephron.com/mdrd/default.html

How fast will you get there? Well, if you have your serum creatinine numbers

for the past few years, you can use the inverse creatinine plotting tool at

this website:

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

html

Where it say " Date Cr Cl is 10 " is when dialysis would typically be started.

Note that with IgAN, it may not be exactly a linear progression at the end,

that is, you tend to coast along with kidney function dropping gradually,

and then suddenly you're close to needing dialysis.

Pierre

new member

> Hi, my name is Ted and I was diagnosed with IgA back in 1995 when I

> failed a life insurance exam after my first child was born.

> Creatinine back then was 1.5, but had a little blood and a lot of

> protrein in my urine. Had a biopsy confirming IgA. My nephrologist

> (cleveland clinic) put me on Prinivil (20 mg/day)and Fish oil

> (12/1000 g/day Max EPA). Protien reduced now but over the years

> creatinine has slowly risen to the 2.6 I'm at now. Doc says I'll need

> a transplant in the future. Can anyone share whith me there

> experience with the pace of increase in their creatinine levels? And

> at what creatinine level will I need dialysis or transplant?

> Thanks much

> and good luck to all

> Ted

>

> 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

>

Posted April 8, 2003 · April 8, 2003

,

Welcome! I'm fairly new also. My son, who is 16, and I both have

IgA. He was just biopsy diagnosed. He too has regular bouts with

heavy blood in his urine. He has never, nor have I, suffered from

mouth ulcers. His nephrologist sees him every four months. I too,

worry about the lack of concern on the part of the doctors. It is

very scary for us to see so much blood in his urine so often. His

nephrologist has told us that blood in the urine is just a common

thing with IgA and shouldn't cause too much concern. I don't know

what to think! This is a great site for information and support

though.

L.

Posted April 8, 2003 · April 8, 2003

Hi

A warm welcome from a fellow UK member. I am very sorry to hear that

you son has been diagnosed with IGAN. A very worrying time for any

mother I am sure.

There are other members in this group with children with IGAN who may be

better versed in informing you of the protocols for treating children,

although I don¡Çt think it is very much different to that for adults. I

am afraid there is really no real true definitive way to diagnose this

condition other than biopsy, but renal specialists usually can get a

reasonable idea via bloodwork and general presentation of the patient,

and your son certainly produced classic symptomatic signs.

For most of us here, treatment does follow the path of just regular

checkups, which includes regular urine checks, bloodwork and key, blood

pressure watch.

It is very important that you are able to communicate well with your

renal team, and not feel that you need to rush appointments, more so

with a child involved. A good idea is to write down specific questions

you need to ask, and maybe some of the other mothers here can help you

with these.

Once again welcome and if you have any further questions please do ask.

Best wishes

UK Moderator

New Member

Hi I am a new member just joined living in U.K., although I am not

suffering from Aga Nephropathy, my 7 year old son is. Two years ago

after suffering a severe rash on his back and then a sore throat his

urine turned dark brown and he suffered from stomache pains and

fever as well as being very tired, since then he has these attacks

at regular intervals usually after suffering tonsillitus. He has

been seen by a renal specialist who has diagnosed Aga Nephropathy,

although no biopsy has been carried out. He has been offered no

treatment other than a annual check-up etc. and this worries me a

lot as he does have these episodes every few months or so, he also

suffers from terrible mouth ulcers sometimes 5 or 6 at a time which

are large and very sore(does anyone else suffer from mouth ulcers as

a symptom?)I just feel there should be more going on in his care,

can anyone give me advice as to what care he should be receiving so

I can push for this with his renal specialist.

Thanks

Posted April 8, 2003 · April 8, 2003

Welcome !

If he was diagnosed with Iga Nephropathy then he should definitely be seen by

a nephrologist as they specialize in just the kidneys and will be able to

tell if your son does indeed have this, especially since he is only 7 I would

push for a neph.

Welcome to the group-it is a wonderful place to learn about this disease.

Dana

In a message dated 4/8/03 9:41:35 AM Central Daylight Time,

mprangley@... writes:

<< Hi I am a new member just joined living in U.K., although I am not