Selecting Treatment for IgA Nephropathy

As an IgA nephropathy patient who was on a high-dose steroid regimen for 9 months in 2021, I wanted to share my thoughts about the study titled “Immunosuppression versus Supportive Care on Kidney Outcomes in IgA Nephropathy in the Real-World Setting,” published in this issue of CJASN.¹ The authors conclude that “Immunosuppressive therapy, compared with supportive care, was associated with a 40% lower risk of clinically important kidney outcomes in patients with IgA nephropathy.“¹ I applaud the effort made by the authors to assess glucocorticoid treatment in patients with IgA nephropathy with eGFRs below 50 ml/min per 1.73 m². Patients newly diagnosed with eGFRs at this low level could greatly benefit from continued research that is very specific to treating IgA nephropathy that has already reduced kidney function so drastically.

This was a retrospective study in a large population of Chinese patients. The study was limited by the data collected, irregularly, from patients over 3 years.¹ It was cited that most published IgA trials are small and not adequately powered for evaluating the efficacy of immunosuppression in IgA nephropathy.¹ I feel that having such a large pool of patient data for this study provided a high level of credibility to the research. And although my personal experience was unpleasant, I understand that glucocorticoids may have provided positive results for many other patients in various stages of disease progression. The study did a great job at breaking down results collected from the China Renal Data System by demographic and treatment protocol.

I did notice that adverse events that resulted in hospitalization (resulting mainly from infections) or a diagnosis of new-onset diabetes among the cohorts were the only ones reported in the Safety Outcomes section.¹ It was acknowledged that, therefore, safety outcomes may be underestimated.¹ Documented side effects that threaten patients of glucocorticoid treatments may affect a patient on a number of fronts: musculoskeletal, metabolic and endocrine, cardiovascular, dermatologic, ophthalmologic, gastrointestinal, neuropsychiatric, and ability to fight infections.² I feel that this study would have benefitted from the inclusion of additional adverse event measures related to the other categories as well.

I personally dealt with a wild and emotional rollercoaster of feelings following my diagnosis and during my treatment regimen. My experience with glucocorticoids was rather unpleasant; for 9 months or longer, I was just not myself. I did not want to participate in life and could often be found sulking in bed. I was distressed about my future and the effect my kidney disease was going to have on my family. My physical appearance changed; I gained weight and suffered from moonface. My fear of contracting coronavirus disease 2019 increased dramatically. My angiotensin-converting enzyme inhibitor dosage was increased to three times the originally prescribed amount. My treatment also overlapped with the events leading up to and including my daughter's wedding. This resulted in extreme depression and very limited participation on my part. My doctors gave me a seemingly quick weaning off period, which resulted in nearly all of my hair falling out within 3 weeks of ending treatment. It took more than a year for my hair to return to its original fullness, and to this day, it still has not grown as long as it was before treatment. I even had to start taking a daily dose of allergy medication; it seems that the steroid treatment weakened my body's ability to handle allergens in the air. What was the outcome of my high-dosage prednisone treatment regimen? Two years later, my eGFR is not any better than it was in 2021. In fact, it has declined further.

Studies that include variations in dosage and length of treatment could provide greater insights about using immunosuppressive treatments for treating IgA nephropathy. Can similar benefits to eGFR be accomplished with lower doses or shorter periods of glucocorticoid treatment? As a patient, I would be very interested in seeing the results of those kinds of studies.

I hope the goal of future research around immunosuppression treatments for IgA nephropathy will include evaluating which treatment protocols can decrease proteinuria and hematuria while also limiting adverse events. Patient self-assessment data could start being collected before, during, and after future treatment studies. Many patients, like me, would greatly appreciate our experiences with treatment options becoming a standard data point in future studies.

Disclosures

The author has nothing to disclose.

Funding

None.

Author Contributions

Writing – original draft: Maria McGuire.