Re new member backgroung info

[Guest guest]

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