I was diagnosed with IgA nephropathy in January 2025 after years of declining eGFR and no other symptoms. My primary care physician's wait-and-see approach over the past 5 years came too late to prevent permanent kidney damage; at the time of biopsy, my UPCR was 1.678 g/g, my eGFR was 28 mL/min/1.73 m², and my MEST-C score was M1 E0 S1 T2 C0. My nephrologist told me my kidneys were "burnt out" and estimated three to five years before dialysis or transplant. After the substantial initial shock, I threw myself into learning everything I could about my diagnosis and treatment options..
Had I been diagnosed a decade earlier in 2015, no targeted therapies for IgA nephropathy existed; the entire guidance for IgA nephropathy occupied Chapter 10 of the KDIGO Clinical Practice Guideline for Glomerulonephritis, released in 2012. I would have been given optimal ACEi or ARB and then corticosteroids, depending on eGFR and proteinuria after 3-6 months of treatment. The goal in 2015 was to achieve <1 g/day of proteinuria and ideally <0.5 g/day.
Fast-forward to the actual time of my diagnosis. By early 2025, the KDIGO draft guidelines included an entire document for IgA nephropathy. The treatment landscape had shifted dramatically over the past decade to layered therapy using the International IgA Nephropathy Prediction Tool to assess risk of ESRD: optimized RAS blockade, recommended class-wide SGLT2 inhibitors, targeted-release budesonide (Tarpeyo), and sparsentan (Filspari). Iptacopan (Fabhalta) was available under accelerated approval. Per the 2024 KDIGO draft guidelines, the proteinuria target had shifted to <0.5 g/day, ideally <0.3 g/day.
By the end of my post-biopsy appointment, my nephrologist had suggested lowering sodium and alcohol intake, exercising regularly, and reducing protein intake (a debated recommendation). Most importantly, he prescribed sparsentan to slow kidney function decline, which proved highly effective. He later added targeted-release budesonide to suppress IgA production and prevent flares. Since March 2025, my labs have remained stable or improved, and I've been in clinical remission, something I never imagined when I first heard my prognosis. At this point, the original 3-5 year prognosis is obsolete.
The recent release of the KDIGO 2025 Clinical Practice Guideline for the Management of Immunoglobulin A Nephropathy (IgAN) and Immunoglobulin A Vasculitis (IgAV) reinforces the dual strategy of reducing pathogenic IgA formation while mitigating downstream injury from nephron loss.
From a patient standpoint, it is encouraging that the 2025 guideline acknowledges the rapid evolution of IgAN therapy - with atrasentan (Vanrafia) now approved and APRIL and dual APRIL/BAFF inhibitors on the horizon - and calls for more frequent KDIGO updates to keep clinicians and health systems current.
Despite these advances, access to IgAN-specific therapies remains uneven worldwide. Many patients continue to rely on older, less targeted treatments because newer options are often unaffordable, unapproved, or unavailable in their regions. Broader reimbursement, international regulatory coordination, and global real-world outcome data will be essential to ensure that the growing number of effective therapies benefit all patients rather than a limited subset with access to specialized care, private insurance, or patient assistance programs. I'm fortunate that the timing of my diagnosis was right and that I had access to best-in-class treatments that helped stabilize my condition.
