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Patient Voice IgAN
Patient Perspective: My Journey With IgA Nephropathy

Released: July 22, 2024

Expiration: July 21, 2025

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Key Takeaways
  • The journey to getting a diagnosis of IgA nephropathy can be long and burdensome, but can be facilitated by partnering with healthcare professionals across multiple settings.
  • Managing IgA nephropathy involves making numerous lifestyle modifications, such as diet changes and regular exercise.
  • Achieving proteinuria goals should be the priority to improve outcomes for patients with IgA nephropathy.

Diagnosis With IgA Nephropathy

My experience as a patient with IgA nephropathy has been a long journey. I had to do a lot of resourceful reaching out to figure out what exactly the disease is. There was not a lot of information when I was first diagnosed in 2018.

I am a nurse practitioner by trade; I have been a nurse for 10 years, and a nurse practitioner for 6. I was actually in nurse practitioner school when I was diagnosed in 2018. It was the day before I graduated that I had my kidney biopsy. Unfortunately, without that kind of background, I think it would have been really difficult to figure out what I had to do to get treatment, or what treatments were available. You have to be very mindful of what information is out there and proactively search out information in the right places too.

I was very fortunate when I was going down the path of diagnosis for IgA nephropathy, with kidney biopsy being the gold standard. I was asymptomatic, but during follow-up care for initiating statin therapy due to a family history of cardiac disease, my primary care provider (PCP) noticed that I had low albumin in my bloodstream. As this is uncommon for a 28-year-old, it prompted a urine study, which detected blood and protein in my urine. 

I think the comprehensive care that I got from my PCP is something that other healthcare professionals (HCPs) should be mindful of. I was at a student health nurse practitioner clinic, so again, I was super lucky to receive the comprehensive care that I did. I have heard a number of stories from my IgA nephropathy patient community of people going years with blood in their urine, and nobody knew what was going on. Those are things that need to be worked up. I had blood and protein in my urine, so I immediately got a kidney ultrasound to check for any abnormalities in my kidney. I did a 24-hour urine twice, and that was when I received my referral to nephrology. But that does not always happen for people with this condition.

Living With IgA Nephropathy

Living with IgA nephropathy has definitely required many daily activity changes, especially in terms of eating a low-sodium diet and avoiding alcohol. It has also restricted my ability to travel, because of the availability of food that meets my dietary needs. These are all things that I was thinking about as I was getting diagnosed and considering how I would want to shape the rest of my life.

In terms of dietary modifications, such as being mindful of my protein intake, mineral intake, or certain electrolytes, I fortunately am in a pretty early stage for my chronic kidney disease (CKD). So, I don't have to watch out for the main electrolytes outside of sodium. In terms of the protein intake, I think, by and large, choosing healthy proteins, like plant-based proteins that have low sodium, is the general recommendation that I follow. But there is no restriction in terms of how much protein I can eat until later stage CKD.

I also prioritize regular exercise and make sure that whatever else is going on in my day, I have quality daily exercise. For me, that means setting aside pretty much all my other goals and making sure that there is time for that as well. Altogether, meal planning and daily exercise, at this point, are crucial for me to prevent any progression of disease.

To HCPs of Patients With IgA Nephropathy

I think nephrology HCPs should be mindful that IgA nephropathy is not a benign disease, even if a patient, like me, presents with no symptoms except for blood and protein in the urine. Without prompt and proper treatment, patients can experience serious disease progression. Personally, I have been fortunate enough to surround myself with HCPs who have been very aggressive with decreasing my proteinuria as much as possible, and adding on more and more therapies to make sure that it is close to normal. Normal for urine protein is less than 30 mg per day on a spot urine test. I think the guidelines will change over the years, but I think it is important to advocate for our patients to have the lowest level of proteinuria possible. That does not just mean following the current recommendation of less than 1 gram per 24 hours, that means ideally less than 200 to 300 mg per 24 hours to prevent disease progression.

Lastly, I am very happy that prednisone is not always the first option that is being offered to newly diagnosed patients with IgA nephropathy now. Prednisone worked well at reducing my proteinuria, but the side effects were barely tolerable, and I would never want to take it again. I think it is great that there are additional options now, but that would not have been possible without clinical trials. I have had my ups and downs with clinical trials, but I think it is key that HCPs understand what clinical trials mean for patients—the double-blinded portion, the open-label portion, and subclinical trials.  I think facilitating clinical trial enrollment will contribute immensely to the approval of even more new therapies for IgA nephropathy. 

Your Thoughts?

What steps do you take to make sure that patients with IgA nephropathy receive comprehensive care? Leave a comment to join the discussion!

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