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🎧 “Why I take losartan; new IgA nephropathy drugs in development”
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When my nephrologist first suspected I had IgA nephropathy, there wasn’t anything to do but watch and wait. My first symptoms that anything was wrong were persistent blood in my urine (usually not visible to the naked eye) and occasional small rises in my creatinine levels. During the initial period of watching and waiting, my doctor didn’t want to do a kidney biopsy right away. The main reason for waiting was because I didn’t have any clinical symptoms that would indicate rapidly progressing disease and if the biopsy did reveal IgA nephropathy, the treatment wouldn’t change—we’d still be watching and waiting. Therefore, he didn’t want to do an invasive procedure that wouldn’t change the current course.
However, when my kidneys started spilling protein into my urine (proteinuria), that indicated a progression of the disease. With new symptoms, getting a confirmation of IgA nephropathy through biopsy would help my doctor and I determine the best course of treatment for me. Which is why in January 2021, I underwent a kidney biopsy—IgA nephropathy was confirmed. Because my kidneys were spilling protein into my urine, my best course of treatment was (and still is) a low-dose blood pressure medication.
My nephrologist explained to me that the blood pressure medication would help the blood vessels in my kidneys relax and allow the proteins to pass through without getting stuck in the tiny filters in my kidneys. Damage to the kidneys occur in IgA nephropathy when “IgA protein builds up in and damages the filtering part of the kidney (glomerulus).”1 The initialism IgA stands for Immunoglobulin A, which is an antibody blood protein that’s part of your immune system.
There is no cure for IgA nephropathy and there is no sure way to predict how the disease will affect a person’s health over time. For some patients, like myself, a blood pressure medication can help reduce proteinuria. Other patients may need immunosuppressants to help keep the immune system from making the proteins that attack the glomeruli, and some patients will need dialysis or a kidney transplant.2
Until recently, there weren’t any drugs specifically designed to treat IgA nephropathy. In December 2021, “the FDA granted accelerated approval to Tarpeyo…to treat patients with primary IgA nephropathy…the action date for full approval is Dec. 20, 2023.”3 Tarpeyo is an immunosuppressant. It is also the first FDA-approved drug to decrease urine protein in IgA nephropathy. It was granted orphan drug designation, which provides incentives to assist and encourage drug development for rare diseases.4,5
Earlier this year, in February 2023, “the FDA granted accelerated approval to sparsentan (Filspari), an oral, once-daily, nonimmunosuppressive medication to reduce proteinuria in patients with IgA nephropathy (IgAN) who are at risk for rapid disease progression.”6
While I’m unsure if there are other new drugs for IgA nephropathy at the time of this writing, as a member of Rare Patient Voice, I’ve been able to provide my feedback and opinions during the past couple of months on potential new drug names for treating IgA nephropathy; which tells me that new treatments are underway. Rare Patient Voice is an organization that connects patients and family caregivers of rare and non-rare diseases with opportunities to share their opinions with companies and researchers by participating in all types of research studies. If you’re interested in learning more or participating, visit rarepatientvoice.com.
As I and my fellow IgA nephropathy warriors continue to watch and wait to see how our diseases will progress, I am hopeful that there will be many more advances in medications and treatments in the near future. In the meantime, I will take every day of good health and energy to try and live my life to the fullest.
Until next time, be strong, be grateful, and keep going!