Re: diagnosed recently

[Guest guest]

Hi Bob. Welcome to the club, although I'm sure you would rather have never

heard of IgA nephropathy.

I don't know about anyone else, but I've never had dermatitis. I have had

excema though, but there doesn't appear to be a relation between that and

IgAN.

I don't know that IgAN is a true autoimmune disease, in the classic sense of

that term, although many sources do call it that. What IS known is that IgAN

can be idiopathic (most of the time), or it can be secondary to other

diseases like lupus and scleroderma, and it has been associated with

rheumatoid arthritis, ankylosing spondylitis, and Reiter's syndrome; celiac

disease, dermatitis herpetiformis; chronic liver disease, and some viral

diseases like HIV and hepatitis B. Also can be a result of multiple myeloma.

Nephrologists and other specialists can usually tell by the results of the

biopsy sample and various lab tests. In my case, I've had it since about

1977, and it doesn't appear to be secondary to anything else.

Urinating more during the night can be a symptom for sure, but that can also

be caused or made worse by any blood pressure med you might be taking, and

the hypertension itself doesn't help either. It's pretty annoying, so you

might want to try to take your blood pressure meds, and especially any

diuretic, as early in the day as possible, and not drink much fluid after

supper (especially drinks like coffee that cause diuresis). Sometimes that

helps.

Good luck.

Pierre

diagnosed recently

> Hi Everyone,

>

> Just got diagnosed with IgA on March 15,2001. I'm a 43 year old male.

> My Nephrologist said I probably have had it for 15 years or more. He

> said my Kidney function was about 20-25% and my creatine was 4.8.

>

> I've had bad dermatitis for about 15 years that has flared up from

> time to time and I was wondering if anyone else experienced this.

> Was thinking that when my dermatitis was active that my IgA was

> active, does that make any sense?

>

> I ultimately was diagnosed with a biopsy, but last fall my blood

> pressure was 240/120, then I began experiencing edema in my ankles,

> feet and calves. I also urinate alot at night-I assume this is a

> symptom of the disease?

>

> I've come to understand this is an autoimmune disease. I've also had

> ulcerative colotis earlier in my life, another autoimmune disease and

> was wondering if other people had also experienced problems with

> other autoimmune diseases?

>

> I was glad to find this group.

>

> Bob

>

[Guest guest]

Hi Bob

Welcome to the group, but of course sorry you have to be diagnosed with IGAN

to be here. I see Pierre has answered your questions excellently for you.

You will find Pierre a seemingly never-ending source of information, and it

is always in terms that us 'patients' can understand.

I was diagnosed with IGAN in 1998, so have had time to get used to it, if

you can ever get used to it. All I can say to you in words of encouragement

is not to let yourself become a martyr to it. In my early days I was

spiralling out of control with depression, need to find 'miracle cures' etc

etc, but since joining this group, have settled down immensely.

Now my tack on it is to live a fulfilling life as my health predicts (I

would add at this juncture, that I do suffer other health issues which

hamper me, not just IGAN), and take every day as it comes. Above all I

always try to follow my Nephrologist/Medics advice, but in the same breath,

I do argue the toss with them sometimes. They sometimes forget that we are

the sufferers of the condition, and to send you away with this diagnosis,

and expect you to accept it without questions, is to me very wrong. Don't

be afraid to ask questions, offer your own personal thoughts, this way you

feel as if you have some control back in the management of your condition.

Has your Neph got you on any meds? What is his long-term plan for you? If

you feel like sharing your experience along the way, we would love to help

you with support.

Very best wishes

diagnosed recently

Hi Everyone,

Just got diagnosed with IgA on March 15,2001. I'm a 43 year old male.

My Nephrologist said I probably have had it for 15 years or more. He

said my Kidney function was about 20-25% and my creatine was 4.8.

I've had bad dermatitis for about 15 years that has flared up from

time to time and I was wondering if anyone else experienced this.

Was thinking that when my dermatitis was active that my IgA was

active, does that make any sense?

I ultimately was diagnosed with a biopsy, but last fall my blood

pressure was 240/120, then I began experiencing edema in my ankles,

feet and calves. I also urinate alot at night-I assume this is a

symptom of the disease?

I've come to understand this is an autoimmune disease. I've also had

ulcerative colotis earlier in my life, another autoimmune disease and

was wondering if other people had also experienced problems with

other autoimmune diseases?

I was glad to find this group.

Bob

[Guest guest]

Hi Bob, welcome! I do not have any dermatitis (yet) but I do have the going

to the toilet in the middle of the night problem. Luckily my blood pressure

is low, but as I spill a lot of protein I do have some oedema problems which

as you know can be uncomfortable. I agree with Pierre, I do not think that

IgAN is an autoimmune disease per se, though I can't explain it either.

_________________________________________________________________________

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[Guest guest]

Bob,

Welcome to our little group. They are very informative on here, and

you'll get some great info about IgAN.

I also didn't find out about my disease until my blood pressure got

pretty high, I was 22 years old and it was 180/130. I was otherwise

a healthy young woman. The doc also said I'd probably had the

disease since my early teens. I take Verapamil twice a day, and

Diovan at night to help control the BP. I've been diagnosed for 5

years now.

And yes, I also pee alot at night. Ruins a good night's sleep, when

you're dreaming and you're searching for a toilet in your dream, you

really have to pee but can't seem to find a good toilet......then

wake up and realize you REALLY have to go LOL I usually get up

between 1-3 times a night. I don't really have to go during the day

at all.

I've heard that once you're kidneys are close to failing, say in the

range you're experiencing, that your skin starts to itch pretty bad

because of the toxins building up in your blood. That may have

something to do with your dermatitis recently, but I doubt you've

been at 20-25% function for the last 15 years, so the dermatitis

probably wouldn't have been IgAN-related earlier in your life.

Ask any questions you have, you're in good company here.

Teri

> Hi Everyone,

>

> Just got diagnosed with IgA on March 15,2001. I'm a 43 year old

male.

> My Nephrologist said I probably have had it for 15 years or more.

He

> said my Kidney function was about 20-25% and my creatine was 4.8.

>

> I've had bad dermatitis for about 15 years that has flared up from

> time to time and I was wondering if anyone else experienced this.

> Was thinking that when my dermatitis was active that my IgA was

> active, does that make any sense?

>

> I ultimately was diagnosed with a biopsy, but last fall my blood

> pressure was 240/120, then I began experiencing edema in my ankles,

> feet and calves. I also urinate alot at night-I assume this is a

> symptom of the disease?

>

> I've come to understand this is an autoimmune disease. I've also

had

> ulcerative colotis earlier in my life, another autoimmune disease

and

> was wondering if other people had also experienced problems with

> other autoimmune diseases?

>

> I was glad to find this group.

>

> Bob

[Guest guest]

Pierre,

Thanks for the info.....I had asked about taking a diruetic on a

kidney failure board on WebMD, but they stated that diruetics really

aren't good meds for kidney patients and could actually make your

kidneys worse. I haven't talked to my doc about getting them yet. I

usually don't have to pee until the late afternoon, and then only

once until after about 8 pm, when I have to go every 30 minutes or

so. It's kind of weird actually. Then about twice during the night

and early morning.

My docs had problems getting a good mixture of BP meds to work, and I

lost 45 lbs. in 3 months because of it. My high BP was making my

heart race almost 24 hrs a day, and I just couldn't keep any weight

on. They finally got the Verapamil/Diovan combo, and my BP came

down. I checked it last night and it was 134/99. I don't really

like the 99, but most of the time when the docs check it it's okay.

I've heard that over time, all BP meds seem to lose effectiveness and

you have to change to another one. Is this true?

Teri

> Believe it or not, I've often had the same dream, Teri. That is, I'm

> dreaming that I have to urinate, then wake up, and actually do have

to go.

>

> Diovan (valsartan) and verapamil SR are a pretty good, state of the

art

> combo for kidney disease-induced hypertension. Should keep the

proteinuria

> down.

>

> Have you mentioned to your doctor that you have to get 2-3 times

per night

> like that. It's just a thought, but you might need to produce more

urine

> during the day, and a diuretic can help with this, as well as help

with the

> high blood pressure. As paradoxical as that may sound, sometimes,

> non-diuretic BP meds can actually make you retain water a bit, and,

once the

> bladder is full enough, usually at an inoppurtune time, you

suddenly have to

> go. I can tell you from personal experience that since I've been on

a

> diuretic, I almost never have to go during the night.

> Pierre

>

> Re: diagnosed recently

>

>

> > Bob,

> >

> > Welcome to our little group. They are very informative on here,

and

> > you'll get some great info about IgAN.

> >

> > I also didn't find out about my disease until my blood pressure

got

> > pretty high, I was 22 years old and it was 180/130. I was

otherwise

> > a healthy young woman. The doc also said I'd probably had the

> > disease since my early teens. I take Verapamil twice a day, and

> > Diovan at night to help control the BP. I've been diagnosed for 5

> > years now.

> >

> > And yes, I also pee alot at night. Ruins a good night's sleep,

when

> > you're dreaming and you're searching for a toilet in your dream,

you

> > really have to pee but can't seem to find a good toilet......then

> > wake up and realize you REALLY have to go LOL I usually get up

> > between 1-3 times a night. I don't really have to go during the

day

> > at all.

> >

> > I've heard that once you're kidneys are close to failing, say in

the

> > range you're experiencing, that your skin starts to itch pretty

bad

> > because of the toxins building up in your blood. That may have

> > something to do with your dermatitis recently, but I doubt you've

> > been at 20-25% function for the last 15 years, so the dermatitis

> > probably wouldn't have been IgAN-related earlier in your life.

> >

> > Ask any questions you have, you're in good company here.

> >

> > Teri

> >

[Guest guest]

Believe it or not, I've often had the same dream, Teri. That is, I'm

dreaming that I have to urinate, then wake up, and actually do have to go.

Diovan (valsartan) and verapamil SR are a pretty good, state of the art

combo for kidney disease-induced hypertension. Should keep the proteinuria

down.

Have you mentioned to your doctor that you have to get 2-3 times per night

like that. It's just a thought, but you might need to produce more urine

during the day, and a diuretic can help with this, as well as help with the

high blood pressure. As paradoxical as that may sound, sometimes,

non-diuretic BP meds can actually make you retain water a bit, and, once the

bladder is full enough, usually at an inoppurtune time, you suddenly have to

go. I can tell you from personal experience that since I've been on a

diuretic, I almost never have to go during the night.

Pierre

Re: diagnosed recently

> Bob,

>

> Welcome to our little group. They are very informative on here, and

> you'll get some great info about IgAN.

>

> I also didn't find out about my disease until my blood pressure got

> pretty high, I was 22 years old and it was 180/130. I was otherwise

> a healthy young woman. The doc also said I'd probably had the

> disease since my early teens. I take Verapamil twice a day, and

> Diovan at night to help control the BP. I've been diagnosed for 5

> years now.

>

> And yes, I also pee alot at night. Ruins a good night's sleep, when

> you're dreaming and you're searching for a toilet in your dream, you

> really have to pee but can't seem to find a good toilet......then

> wake up and realize you REALLY have to go LOL I usually get up

> between 1-3 times a night. I don't really have to go during the day

> at all.

>

> I've heard that once you're kidneys are close to failing, say in the

> range you're experiencing, that your skin starts to itch pretty bad

> because of the toxins building up in your blood. That may have

> something to do with your dermatitis recently, but I doubt you've

> been at 20-25% function for the last 15 years, so the dermatitis

> probably wouldn't have been IgAN-related earlier in your life.

>

> Ask any questions you have, you're in good company here.

>

> Teri

>

[Guest guest]

A diuretic can theoretically reduce kidney function a bit, but it usually

isn't a concern. The benefits in reducing edema and hypertension far

outweigh any harm. In addition to helping to eliminate extra fluid (which

many of us have without realising it, since it can accumulate in the

abdomen, and not just the extremities), a diuretic works synergistically

with ACE inhibitors and most other BP meds to enhance the blood pressure

lowering effect. In fact, they work exceptionally well in combination with

ACEI's. Few kidney patients escape being on one eventually, and many people

find that it is darn near impossible to adequately control blood pressure

without a diuretic. It is true that BP meds tend to lose some of their

effectiveness over time (but it's not a certainty). This is because the body

has numerous processes that are capable of regulating BP, and they all

conspire to raise it back up to where they think it should be.

Aside from kidney issues, a diuretic is the type of drug most proven to

reduce the complications of high blood pressure (stroke especially).

I've been on furosemide, a powerful loop diuretic, since last fall, but I've

been on the more common thiazide-type diuretics many times over the past

decade. Every single one of my five nephrologists has prescribed one at some

time or other. Some doctors will use indapamide, which is thought to be

milder on the kidneys, but once you are at 50% or less kidney function,

thiazides may not be powerful enough. This is a decision for a nephrologist

to make, obviously.

If your BP *averages*135/99 when measured at rest (5 minutes seated, no

talking, also no coffee and not after eating), this would tend to suggest

that it isn't adequately controlled. The 134 is Ok, but the 99 would be way

too high (not that it's an emergency or anything though). The goal for any

kidney patient nowadays is 120/75, or thereabouts. Of course, it's easier

said than done.

Pierre

Re: diagnosed recently

> >

> >

> > > Bob,

> > >

> > > Welcome to our little group. They are very informative on here,

> and

> > > you'll get some great info about IgAN.

> > >

> > > I also didn't find out about my disease until my blood pressure

> got

> > > pretty high, I was 22 years old and it was 180/130. I was

> otherwise

> > > a healthy young woman. The doc also said I'd probably had the

> > > disease since my early teens. I take Verapamil twice a day, and

> > > Diovan at night to help control the BP. I've been diagnosed for 5

> > > years now.

> > >

> > > And yes, I also pee alot at night. Ruins a good night's sleep,

> when

> > > you're dreaming and you're searching for a toilet in your dream,

> you

> > > really have to pee but can't seem to find a good toilet......then

> > > wake up and realize you REALLY have to go LOL I usually get up

> > > between 1-3 times a night. I don't really have to go during the

> day

> > > at all.

> > >

> > > I've heard that once you're kidneys are close to failing, say in

> the

> > > range you're experiencing, that your skin starts to itch pretty

> bad

> > > because of the toxins building up in your blood. That may have

> > > something to do with your dermatitis recently, but I doubt you've

> > > been at 20-25% function for the last 15 years, so the dermatitis

> > > probably wouldn't have been IgAN-related earlier in your life.

> > >

> > > Ask any questions you have, you're in good company here.

> > >

> > > Teri

> > >

>

>

>

[Guest guest]

Hi!

I am new to this group and hoping to get some feedback. I have had IgA for

approx 12 years now and things have been stable up to the last couple of

years. Protein started to go up and also blood pressure so they put me on

ACE inhibs but I have had side effects with Ramipril, Captopril and

Candesatin (I think). I was then put on Atenelol which are beta blockers.

Would they still protect the kidneys like the Ace drugs?

On the subject of other auto immune diseases, I have had three bouts of

reactive arthritis in the last 18 months, causing excrutiating pain in the

large joints. Investigations are still ongoing but it would appear that two

episodes have been linked to having the flu injection which seems to start a

whole catylist of problems, the other was after having an insect bite and

then a tetanus jab. Has anyone else had problems with IgA flaring up after

having vaccinations of any kind?

I had the flu injection in mid November last year. 2 weeks later went down

with a virus which then went into an inflamed throat for 4 weeks. GP said

medication wasn't necessary because there was no mucus present. I then

develped pleurisy as a secondary infection. It was during these episodes at

the beginning of January that the joint paints came in building up gradually

till I had difficulty in getting out of bed in the morning. I was eventually

hospitalised for a week. Bone scan proved negative so what my neph thinks is

that it was reactive arthritis. I am now on a course of steroids which do

seem to take the pain away and hope to be taking off them next week, but I am

dreading the same happening again. He has decide I shouldn't have the flu

injection anymore. Has anyone had any similar problems?

Thanks and its good to be part of such a group.

Jeanie

[Guest guest]

Hi Jeanie. Welcome to the group.

Your case is somewhat similar to mine, in that I had the IgAN for roughly 15

years without much problem, until I developed high blood pressure. Also had

a lot of trouble with BP meds. ACE inhibitors have only been in common use

since the late 80's or so, and candesartan which you have tried is a recent

member of a class of drugs that are sort of close cousins to the ACE

inhibitors, called angiotensin receptor blockers (ARBs for short). The first

ARB only came on the market in 1995 (at least where I am), so they are all

fairly recent, and not as proven in the long term as the ACEIs. Even the

ACEIs are not really proven in the longer term, but both classes seem to

have properties that help reduce protein spillage in the urine, and there is

accumulating evidence that they tend to have a renal protective effect. So,

currently, the practice for nephritis patients of all kinds is to start with

an ACEI first and see what that does. A fairly large percentage of people on

ACEIs develop a nagging dry cough that just won't go away. If that happens,

doctors often switch them to an ARB, as appears to have been the case with

you, although they may sometimes try a different ACEI first. Next in line

are the calcium channel blockers, two of which also seem to have

anti-proteinuric properties and may be renal protective. These are diltiazem

and verapamil. However, in terms of protecting from the complications of

high blood pressure in general, these drugs are controversial at present.

With a beta blocker like atenolol, there probably isn't as much renal

protective effect, but on the other hand, there is some, and beta blockers

are much more established and very well-proven drugs in the treatment of

hypertension (far beyond what we can claim about any other drug except

diuretics). Better a drug that isn't quite as renal protective if it gives

you effective blood pressure control, than a drug that you can't tolerate or

that doesn't control your BP. Many people take a combination of drugs, like

for example, a drug like candesartan (or valsartan, irbesartan, etc.) with a

calcium channel blocker, or with a beta blocker. Everybody reacts

differently to different drugs. Some people can't take a beta blocker, but

they can take the others. So, I can't make any absolute statement about it,

but a beta blocker is a good drug. If I wasn't an asthmatic, I would want to

be on one.

Now, as for the flu vaccinations -- there is no real answer to that one. We

had a discussion about this in this group last Fall, and I expect we will

again next Fall : )

The current thinking among most doctors seems to be that it's better not to

get a true influenza if a person has any kind of kidney disease. On the flip

side, there are many non-believers about flu shots. I can tell you my own

experience though, and my observations after getting one the past two years.

Also got the pneumonia shot one year. This is purely anecdotal and it has no

scientific value whatsoever, but I did manage to observe my lab results

before, and after the flu shots.

This is in terms of my serum creatinine only. While my creatinine has been

creeping up gradually for years, it was 230 sometime during the summer of

1999. Flu shot that Fall. Next time, in mid 2000, it was 250, but settled

back down to 225 by the summer. Next flu shot in late summer 2000. Sometime

in the couple of months that followed, it was up again to 270-285. Now it is

around 285-300, and I'll see my next results in May. Now, I have no idea if

any of this has anything to do with flu shots, or if it's just coincidental,

but rises in serum creatinine absolutely did occur in the weeks following

the flu shots. It settled back down after the first one, but not after the

second one (at least not so far, maybe by summer it will). I can tell you

one thing though - I didn't get the flu, even though people around me did!

Also didn't react in any other way to the flu shot - while I know that some

people have trouble with them.

I guess that ultimately, it comes down to whether a person is particularly

sensitive to flus or not, and to the flu shot itself. I suppose a person who

happens to have the type of IgAN that flares up with respiratory infections

would have a worse time with the flu, than someone like me who has never had

flare-ups during respiratory infections. Unfortunately, this is one of those

questions that really doesn't have a definite answer, anywhere. Right now,

my thinking is that this year, I'll pass on the flu shot and see what

happens - although I'll have to see what my doctor says. Maybe I can be

convinced.

Glad you found the group.

Pierre

P.S. If there is any definitive advice I CAN give on the subject of BP meds,

it's that people who have high blood pressure due to IgAN should think twice

about experimenting with their meds on their own, lest they want to end up

in the ER with a hypertensive crisis. This is from personal experience. So

the medical disclaimer in the Files area of the group's Yahoo page applies

even more in the case of BP meds.

Re: diagnosed recently

> Hi!

>

> I am new to this group and hoping to get some feedback. I have had IgA

for

> approx 12 years now and things have been stable up to the last couple of

> years. Protein started to go up and also blood pressure so they put me on

> ACE inhibs but I have had side effects with Ramipril, Captopril and

> Candesatin (I think). I was then put on Atenelol which are beta blockers.

> Would they still protect the kidneys like the Ace drugs?

>

> On the subject of other auto immune diseases, I have had three bouts of

> reactive arthritis in the last 18 months, causing excrutiating pain in the

> large joints. Investigations are still ongoing but it would appear that

two

> episodes have been linked to having the flu injection which seems to start

a

> whole catylist of problems, the other was after having an insect bite and

> then a tetanus jab. Has anyone else had problems with IgA flaring up

after

> having vaccinations of any kind?

>

> I had the flu injection in mid November last year. 2 weeks later went down

> with a virus which then went into an inflamed throat for 4 weeks. GP

said

> medication wasn't necessary because there was no mucus present. I then

> develped pleurisy as a secondary infection. It was during these episodes

at

> the beginning of January that the joint paints came in building up

gradually

> till I had difficulty in getting out of bed in the morning. I was

eventually

> hospitalised for a week. Bone scan proved negative so what my neph thinks

is

> that it was reactive arthritis. I am now on a course of steroids which do

> seem to take the pain away and hope to be taking off them next week, but I

am

> dreading the same happening again. He has decide I shouldn't have the flu

> injection anymore. Has anyone had any similar problems?

>

> Thanks and its good to be part of such a group.

>

> Jeanie

>

>

>

[Guest guest]

Oops! I don't think that p.s. came out quite right. I didn't mean to suggest

that you would do this Jeanie. It was just aimed at the general public out

there who might read my comments about BP medications. I've done it myself.

Once ended up in the hospital for a few days because of it. IgAN seems to be

particularly sensitive to withdrawal of BP medication when it has been used.

Pierre

Re: diagnosed recently

>

> P.S. If there is any definitive advice I CAN give on the subject of BP

meds,

> it's that people who have high blood pressure due to IgAN should think

twice

> about experimenting with their meds on their own, lest they want to end up

> in the ER with a hypertensive crisis. This is from personal experience. So

> the medical disclaimer in the Files area of the group's Yahoo page applies

> even more in the case of BP meds.

>

>