Standard of care for "suspected" IgAN?
Posted: Sun Feb 18, 2018 1:04 am
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.
https://www.ncbi.nlm.nih.gov/pubmed/18644797
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?
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.
https://www.ncbi.nlm.nih.gov/pubmed/18644797
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?