Not sure if I have IgA Nephropathy. Will it damage my new kidney?

[Kbristow]

About 8 years go when I was on the kidney wait list, doctors thought I had IgA Nephropathy. But my kidney function was so far gone (GFR 15) that they didn't bother to biopsy it because it wasn't going to change the fact that I needed a kidney. Their focus was on controlling my blood pressure. I was fortunate to receive a living donor kidney, and have been fine ever since. 

Wondering who else out there was told you likely have IgAN but never biopsied. Why and why not according to your doctor? I understand that it is often a slow-acting disease, and it may or may not eventually damage my transplanted kidney. My doctors are watching my creatinine which has been stable in the six years I've been transplanted.

But am I watching out for the same symptoms? foamy, dark urine? high blood pressure? proteinuria? Will it be too late by then? I'm very curious if I have IgAN or not and wondering if there is a benefit to know.

[LavenderRabbit]

I have IGA nephropathy, I’ve had a transplant for two years now. I was diagnosed with IGA 20 years before my transplant. It is my understanding that the IGA will start affecting my new kidney, but I’m hoping that it will be a very long time before it gets bad. I’m pretty sure I had IGA neuropathy long before it was diagnosed.

Your doctor should be looking for all the signs in your lab work. The one that will pop up first is protein in the urine. You won’t see it, you won’t feel it.

If I were you I would talk to your doctor about it and make sure that he or she is looking out for it.

[Roxylulu]

My husband has IGA is is recently transplanted (less than two weeks!). It is my understanding that yes, the IGA will most certainly attack the new kidney. However the antirejection/immune suppressions should be enough to avoid IGA "flareups" and prevent the slow attack that killed the kidneys in the first place. Due to the IGA, he does not qualify for any of the non-steroid anti rejection protocols and will remain on a steroid to keep the IGA at bay. They are also doing great research in finding that IGA is produced in the lining of the intestines and there might be some drugs on horizon to specifically target the production of the antibodies.

[LavenderRabbit in reply to Roxylulu]

wow! I have not heard about that. Thanks.

[6V53]

I also have IgAN. I am 5 1/2 months post transplant. I can't imagine why they wouldn't biopsy if your condition was bad enough to warrant transplant. Like the others said, IgA is known to attack the new kidney. I have known I hadCKD since 96, but also think I had it much early, possibly even into early childhood. I would also expect the IgA to take a long time to do significant damage. I am more concerned with diet, exercise, and taking my meds on time.

I am also on a lifelong steroid plan, but I think this is more center dependent than a standard of care. I had been listed at 2 centers and the other did not think it necessary to do steroids long term.

[LauraW4Jc]

I was diagnosed with IgAN by biopsy. I had a transplant in 2005, 17 1/2 years ago. I am not on a steroid protocol and have had no evidence of IGA damaging my new kidney. 17.5 years out and I have perfect kidney function, thank you, Lord! I am so, very thankful, so very grateful, and so very blessed!

[LRob0223]

Thank you for posting. I too have IGA confirmed by two biopsies. Originally they told me no to worry that it could take 25 years before it may effect my kidneys enough that I'd need a transplant. Two and a half years later I am getting a transplant in a month. My dr told me there is a risk of it effecting the new kidney but now that they know to watch for it they are positive they can catch it early and help slow it down. I guess time will tell. Good luck to you.