Re: Re new member backgroung info

[Guest guest]

Hi Rob

First off welcome to the group, and Happy New Year to you.

Rob, your message is very sad to read, you certainly seem to have a few

problems going on here, aside the your IGAN, which may or may not be

adding to your general state of health.

I will address your question of diet first of all. Rob no disrespect to

you, but I strongly advise you not to embark on any sort of diet until

you have had the guidance of your medical team. You are on a fair

amount of medication here, and personally from what you have said, I

think a meeting between yourself and your doctors is a crucial first

step, where a proper management regime seems to be needed.

With IGAN proper controlled observance of your BP is essential, so my

advice to you is to see your medical team as soon as possible to arrange

for a full work up and plan for your future medical care.

I am sorry if I have not given you the information you seek at the

moment, but I am sure if you get a good structured medical input to your

problems, you will see and hopefully feel the benefits soon. You are

very welcome to our group, but my own personal view is that at the

moment your needs are greater than anything we as non-medical experts

can offer.

Please do keep us informed of your progress if you wish.

Best wishes

Re new member backgroung info

Hi My names Rob and I`m a 36 year old who was diagnosed with iga 2

1/2 years ago. I was taking my daughter to the doctors for a routine

check up and while I was there I happened to ask our doctor why it

would seem I was putting on weight. The doctor jocked it was middle

age spread but took my blood pressure any way. He was that alarmed

that he made a phone call there and then and the following day I was

seeing the register at our local renal debt.After numerous tests I

had biopsy and it was confirmed that I had iga and it was progressive.

It was estimated that I had lost 60% kidney funtion in the last 12 to

18 months.

We know this becouse I had had numerous tests for a complaint that

they have still not found the underlying problem.

My original complaint involved reacurring flu like temp`s , sweating

buckets but feeling freezing cold, pains in my lower back that

stopped me moving and general feeling unwell, the only way forward

was two whole days in bed which is unheard of for me.They tried

looking in my bladder, ulta sound,endoscopy,tracoscopy, stool tests,

urine tests, blood tests (a few of the above tests have been carried

out lately as they are still looking)the only thing they can come up

with is irratiable bowel syndrome.

After the biopsey it was decided that a high dose steriod should be

started and I was put on 60mg a day, and a course of numerous drugs

to try and contral my blood pressure.

After a year or so I ran into the surgen who done the biopsey and he

was sure that becouse of the speed of the kidney failure he was sure

I would have had to have a transplant asap.

It is still not 100% positive that the steriods did in fact halt the

iga but something has.

I have the typical steriod image which I think is known as cushings

syndrome, My head swelled to double its size and people were asking

me to relay messages to my brother when in fact they ment me.I have

the buffalo hump,My weight has piled on, (up to 21st when I was only

16). I briuse easily,keep having reacurring fungil infections, have

musle weakness in my legs,shortness of breath, early stage caterachs

and I`m due to have a bone density scan jan 15th.

I am now trying to get off prednisolone but am having problems,

after polite arguements with my consultant who instructed me to go to

the gym and stop eating(which is not exactly easy when you can`t even

walk down the road with out having to sit down to get your breath and

having a next to nothing appertite). She finaly did a test that

proved what I had been saying for the last year, my addrenal gland

was not kicking in and I am not producing hardly any off my own

natual steriod.

The medication I am on now is as follows,

Prednisolone 9 mg (have been trying for over a year to go down to 7.5

but could not manage, am now trying 1mg tablets.

Frusimide 120mg

Moxonidine 400mcg AM 200mcg PM (Replaced Isten which blew my ankle

and feet up)

Quinapril 40mg

Rabeprazole 10mg(which was reintrodueced to replace esomeprazole

after my tracoscopey when they could not find any evidence of reflux,

they said I did not need anything but I know I do, I`ve ran out on a

few occasions and been in a lot of pain.

Bisoprolol furmarate 10mg.

The question I have for the board is diet,

I may be in remission but my blood pressure is not back under contral

and Ifeel completly drained after a days work, when I knock myself

down to 7.5 mg pred I can be assured that my 5pm I`m falling asleep

(if I last that long), but then I`m awake at 11.00 and can`t sleep a

full night.Ihave also got sleep apnia and have a cpap machine which

is brilliant now I have got used to using it.

I`ve read that a diary free diet and cutting out red meat and

caffiene may help, has anyone got any input on this, I used to be a

heavy drinker but have cut this out completly now becouse it Knocks

me for six and when I am trying to recover I seem to pick up any germ

going and simple colds end up as broncitis which last for weeks.

If any one can over any advise Iwould be very grateful

Thanks Rob

[Guest guest]

Hi Rob. Welcome to the group. You sure have a complicated history there.

Hopefully, you are right that your IgAN has been halted. Steroids do bring

down the protein in the urine part of IgAN, if it's really high in the first

place. But, as you explained, it's not without side effects. Don't know what

specific symptoms cutting back on dairy, red meat and caffeine would help.

Hard to say anything without knowing more about your numbers (like serum

creatinine, creatinine clearance (or glomerular filtration rate, or current

% kidney function), 24 hour protein in urine). Dairy products and red meat

themselves don't affect IgAN as such, but when renal failure is more

advanced, limiting dairy (because of phosphorus) and meat (because of

protein restriction) can be part of a renal diet prescribed by the renal

dietician. I don't know if your renal failure is enough to need that.

Caffeine can affect blood pressure pretty dramatically in some people, so,

if you have high blood pressure, as you do, limiting yourself to one cup in

the morning, or better yet, decaf, might help lower your blood pressure.

It's hard to tell though, because some people are more sensitive to caffeine

than others. I count 4 blood pressure meds that you are taking. That's quite

a lot. No wonder you don't feel that great. I would feel completely wiped

out on those medications myself. Are you sodium restricted? This is usually

necessary when people are on high doses of oral steroids for a long time -

helps prevent swelling and also helps to lower the blood pressure.

If your BP needs so many meds, it makes me wonder just how much your IgAN is

in remission. I'm not a doctor, but because of many of the symptoms you

describe, it sure sounds like you might be " volume overloaded " , which just

means you are retaining too much fluid - which can causes shortness of

breath, and symptoms like sleep apnea. How often are you being seen, and is

it by a nephrologist?

Pierre

Re new member backgroung info

> Hi My names Rob and I`m a 36 year old who was diagnosed with iga 2

> 1/2 years ago. I was taking my daughter to the doctors for a routine

> check up and while I was there I happened to ask our doctor why it

> would seem I was putting on weight. The doctor jocked it was middle

> age spread but took my blood pressure any way. He was that alarmed

> that he made a phone call there and then and the following day I was

> seeing the register at our local renal debt.After numerous tests I

> had biopsy and it was confirmed that I had iga and it was progressive.

> It was estimated that I had lost 60% kidney funtion in the last 12 to

> 18 months.

> We know this becouse I had had numerous tests for a complaint that

> they have still not found the underlying problem.

> My original complaint involved reacurring flu like temp`s , sweating

> buckets but feeling freezing cold, pains in my lower back that

> stopped me moving and general feeling unwell, the only way forward

> was two whole days in bed which is unheard of for me.They tried

> looking in my bladder, ulta sound,endoscopy,tracoscopy, stool tests,

> urine tests, blood tests (a few of the above tests have been carried

> out lately as they are still looking)the only thing they can come up

> with is irratiable bowel syndrome.

> After the biopsey it was decided that a high dose steriod should be

> started and I was put on 60mg a day, and a course of numerous drugs

> to try and contral my blood pressure.

> After a year or so I ran into the surgen who done the biopsey and he

> was sure that becouse of the speed of the kidney failure he was sure

> I would have had to have a transplant asap.

> It is still not 100% positive that the steriods did in fact halt the

> iga but something has.

> I have the typical steriod image which I think is known as cushings

> syndrome, My head swelled to double its size and people were asking

> me to relay messages to my brother when in fact they ment me.I have

> the buffalo hump,My weight has piled on, (up to 21st when I was only

> 16). I briuse easily,keep having reacurring fungil infections, have

> musle weakness in my legs,shortness of breath, early stage caterachs

> and I`m due to have a bone density scan jan 15th.

> I am now trying to get off prednisolone but am having problems,

> after polite arguements with my consultant who instructed me to go to

> the gym and stop eating(which is not exactly easy when you can`t even

> walk down the road with out having to sit down to get your breath and

> having a next to nothing appertite). She finaly did a test that

> proved what I had been saying for the last year, my addrenal gland

> was not kicking in and I am not producing hardly any off my own

> natual steriod.

> The medication I am on now is as follows,

> Prednisolone 9 mg (have been trying for over a year to go down to 7.5

> but could not manage, am now trying 1mg tablets.

> Frusimide 120mg

> Moxonidine 400mcg AM 200mcg PM (Replaced Isten which blew my ankle

> and feet up)

> Quinapril 40mg

> Rabeprazole 10mg(which was reintrodueced to replace esomeprazole

> after my tracoscopey when they could not find any evidence of reflux,

> they said I did not need anything but I know I do, I`ve ran out on a

> few occasions and been in a lot of pain.

> Bisoprolol furmarate 10mg.

> The question I have for the board is diet,

> I may be in remission but my blood pressure is not back under contral

> and Ifeel completly drained after a days work, when I knock myself

> down to 7.5 mg pred I can be assured that my 5pm I`m falling asleep

> (if I last that long), but then I`m awake at 11.00 and can`t sleep a

> full night.Ihave also got sleep apnia and have a cpap machine which

> is brilliant now I have got used to using it.

> I`ve read that a diary free diet and cutting out red meat and

> caffiene may help, has anyone got any input on this, I used to be a

> heavy drinker but have cut this out completly now becouse it Knocks

> me for six and when I am trying to recover I seem to pick up any germ

> going and simple colds end up as broncitis which last for weeks.

> If any one can over any advise Iwould be very grateful

> Thanks Rob

>

[Guest guest]

I wonder why your doctor didn't try every other day prednisone. That

really reduces the side effects, especially the face swelling. The

theory is the day in between allows your body to rebound. It works

very well with my son. Pam

> Hi My names Rob and I`m a 36 year old who was diagnosed with iga 2

> 1/2 years ago. I was taking my daughter to the doctors for a

routine

> check up and while I was there I happened to ask our doctor why it

> would seem I was putting on weight. The doctor jocked it was middle

> age spread but took my blood pressure any way. He was that alarmed

> that he made a phone call there and then and the following day I

was

> seeing the register at our local renal debt.After numerous tests I

> had biopsy and it was confirmed that I had iga and it was

progressive.

> It was estimated that I had lost 60% kidney funtion in the last 12

to

> 18 months.

> We know this becouse I had had numerous tests for a complaint that

> they have still not found the underlying problem.

> My original complaint involved reacurring flu like temp`s ,

sweating

> buckets but feeling freezing cold, pains in my lower back that

> stopped me moving and general feeling unwell, the only way forward

> was two whole days in bed which is unheard of for me.They tried

> looking in my bladder, ulta sound,endoscopy,tracoscopy, stool

tests,

> urine tests, blood tests (a few of the above tests have been

carried

> out lately as they are still looking)the only thing they can come

up

> with is irratiable bowel syndrome.

> After the biopsey it was decided that a high dose steriod should be

> started and I was put on 60mg a day, and a course of numerous drugs

> to try and contral my blood pressure.

> After a year or so I ran into the surgen who done the biopsey and

he

> was sure that becouse of the speed of the kidney failure he was

sure

> I would have had to have a transplant asap.

> It is still not 100% positive that the steriods did in fact halt

the

> iga but something has.

> I have the typical steriod image which I think is known as cushings

> syndrome, My head swelled to double its size and people were asking

> me to relay messages to my brother when in fact they ment me.I have

> the buffalo hump,My weight has piled on, (up to 21st when I was

only

> 16). I briuse easily,keep having reacurring fungil infections, have

> musle weakness in my legs,shortness of breath, early stage

caterachs

> and I`m due to have a bone density scan jan 15th.

> I am now trying to get off prednisolone but am having problems,

> after polite arguements with my consultant who instructed me to go

to

> the gym and stop eating(which is not exactly easy when you can`t

even

> walk down the road with out having to sit down to get your breath

and

> having a next to nothing appertite). She finaly did a test that

> proved what I had been saying for the last year, my addrenal gland

> was not kicking in and I am not producing hardly any off my own

> natual steriod.

> The medication I am on now is as follows,

> Prednisolone 9 mg (have been trying for over a year to go down to

7.5

> but could not manage, am now trying 1mg tablets.

> Frusimide 120mg

> Moxonidine 400mcg AM 200mcg PM (Replaced Isten which blew my ankle

> and feet up)

> Quinapril 40mg

> Rabeprazole 10mg(which was reintrodueced to replace esomeprazole

> after my tracoscopey when they could not find any evidence of

reflux,

> they said I did not need anything but I know I do, I`ve ran out on

a

> few occasions and been in a lot of pain.

> Bisoprolol furmarate 10mg.

> The question I have for the board is diet,

> I may be in remission but my blood pressure is not back under

contral

> and Ifeel completly drained after a days work, when I knock myself

> down to 7.5 mg pred I can be assured that my 5pm I`m falling asleep

> (if I last that long), but then I`m awake at 11.00 and can`t sleep

a

> full night.Ihave also got sleep apnia and have a cpap machine which

> is brilliant now I have got used to using it.

> I`ve read that a diary free diet and cutting out red meat and

> caffiene may help, has anyone got any input on this, I used to be a

> heavy drinker but have cut this out completly now becouse it Knocks

> me for six and when I am trying to recover I seem to pick up any

germ

> going and simple colds end up as broncitis which last for weeks.

> If any one can over any advise Iwould be very grateful

> Thanks Rob