Standard of care for "suspected" IgAN?

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Standard of care for "suspected" IgAN?

Post by BEAR15 »

Hello - I wanted to ask: what is the standard of care when IgA Nephropathy is suspected a long time (4 years in my case), but kidney damage is not apparent?

I'm a male in my 40s in Sydney, Australia. Nephrologists began managing me for suspected IgAN four years ago. But managing blood pressure is all they will do at this point. A kidney biopsy was planned then scrapped.

My symptoms are hematuria (20 cells/HPF), high blood pressure (managed by three separate drugs), and increased sleep needs. My blood pressure had been high (145/90) almost 18 years. I had a heart attack a year and a half back. (Apparently caused by the BP - I had no other risk factors). My kidneys have two stable 2-3 cm cysts and two 1 cm stones. They are filtering normally (eGFR > 90). But I find myself gradually needing more sleep (from 8 hours to 10), and more interrupted sleep (interrupted twice a night now, to pee, even if I don't drink water before sleeping). I also find myself more affected by cold and flus.

My consulting physician was keen on a biopsy, but he's been overruled. The policy in the nephrology department now is to only biopsy if kidney function declines. The term is "you have to earn your biopsy". I've been reading up about steroid pulse therapy -- apparently, it helps prevent ESRD in IgAN. Surely, earlier intervention is better than later.

I am concerned because it has been 4 years, a heart attack, trace urine protein scares, and I don't even have a confirmed diagnosis.

Should I should be pressing my physicians to do something else? Since they do not want a biopsy, is there a blood test for IgAN (specifically, to detect mutant IgA1 or immune complexes that cause IgAN)? Or is managing BP all that's done until kidneys function begins to decrease?
Last edited by BEAR15 on Sun Feb 18, 2018 6:44 pm, edited 1 time in total.
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Joined: Thu Aug 07, 2014 3:57 pm

Re: Standard of care for "suspected" IgAN?

Post by Johnylefox »

I was symptomatic with IGA in 2009.
It was not diagnosed until 2014.
By which time damage was substantial.
I was under a Urologust in 2009 and 2012 but he determined the blood and protein in my wee was one of those things.
Once diagnosed my nephrologist set a BP target of 120/85.
This was achieved at first but declined over time.
The main idea is to keep bp in check.
IGA is very unpredictable.
The standard of care should be the usual standard which applies to each country i.e. UK is reasonable skill and care.
There is no guaranteed way to stop IGA.
Just be as healthy as you can be.
I was diagnosed Jan 2014 and was on dialysis within 2 years.
Transplant received in Dec 2017.
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Re: Standard of care for "suspected" IgAN?

Post by wagolynn »

Just to add, with sick kidneys the immune system tends to be depressed hence the increased sickness.

It my be worth going to your doctor to check out the sleepiness, just in case there are other causes. (Sleepiness usually shows up later, say eGFR 20 -30)

As mentioned above, there is no cure, and no fixed time table of degeneration.

The only thing you can do is to, eliminate added salt (at the table, and in cooking) from your diet to help with the BP, eat healthily (Google 5-a-day), and take some exercise. The healthier you are, the easier you will cope with the later stages, and/or a transplant.

Best wishes.
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Joined: Wed Jan 31, 2018 2:24 pm

Re: Standard of care for "suspected" IgAN?

Post by BEAR15 »

Thanks Johnylefox and Wagolynn. Regarding an IgAN cure, I've been doing some reading. Some doctors use steroid pulse therapy to manage decline (it stops excess IgA production). The most promising research seems to be IgA protease (which breaks apart the IgA molecule - it can even reverse IgAN deposits in the kidney). Also substances that inhibit the STAT3 and Interleukin-6 proteins appear promising. Links:
STAT3: ... nhibitors/

Johnylefox - like you, I too went to a urologist initially a couple of years. After cytoscopy and kidney CT, he said the blood in urine was probably due to "leaky kidneys" (his words) - one of those probably harmless things.

Sleep's been interrupted more lately (waking twice or thrice). I wonder if it's caused by blood pressure dipping too much during sleep. Earlier, BP would not dip at night, but I now take a BP med before sleeping. Immediately after I wake from interrupted sleep, my urine is clear. Soon after, it's dark yellow. It's as if the kidney's 'woken up' too when I wake.
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