IGA nephropathy resistant proteinuria

[Maryam63]

Hey i posted here last year about my partner who got diagnosed out of blue with IGA nephropathy. Biopsy showed it can belong to good prognosis and medication with ACE inhibitors started soon after. He was on Quinapiril 10mg initialy and responded well to it after 5 months to bring down protein from 1 gr to 500 mg ! Then it spiked up again and they increased it to 20mg and since then it stays high about 1.1 gr :/ ... latest ACR is 80 ! Saw his dr today which he is abit concerned but generally not too anxious and increased the pill to 30mg daily ! .... his GFR improved to about 82 from 63 initially but what i heard is proteinuria needs to be treated well for good prognosis ! So just wanna know if anyone else had the sameproblem ? Can it be go down to a minimum level one day ?!! Its now a year since his diagnosis and proteinuria is still about 1.1 gr a day !!

Also is it normal to have joint pain sometimes in finger with this disease?

He is 38yo , very fit and healthy.

[shpar]

Hello Maryam, I was diagnosed with IgA nephropathy a little over 2 years now. When I was diagnosed my GFR was around 30 and rapidly decreasing everyday. One thing about GFR is that it can vary from day to day. And even drastic changes, at a microscopic level, may not be huge differences overall with kidney health i.e a drop from 33 to 25 isn’t alarming (what I was told by a nephrologist). The key is to limit protein intake and stay hydrated. I’ve not been steady for the past 2 years in the mid 20 range due to an initial round of steroids for a period of 6 months following initial diagnosis. Based on your partners numbers it appears they caught it early enough so that is definitely promising.

If he has joint pain, I would suggest you ask your doctor to check his uric acid levels. I was having similar pain in my foot and toes and turned out I was experiencing gout flares.

I’m not sure if I’ve helped you a lot but I hope some of the information will be valuable for you and your partner.