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One of the most common symptoms of immunoglobulin A nephropathy — also known as IgA nephropathy, IgAN, or Berger’s disease — is hematuria, or blood in the urine. This rare kidney disease happens when the immune system makes abnormal IgA, a type of antibody. IgA collects in the kidneys’ filtering units, called glomeruli — tiny clusters of blood vessels that help remove waste and fluid from the body.
As IgA antibodies build up over time, they can cause inflammation and damage the glomeruli. The kidneys can no longer filter waste products properly, which leads to hematuria and proteinuria (protein in urine). This leakage can change the color of your urine and cause edema (swelling) in your hands and feet. Damaged kidneys can also raise your risk of infection and affect your blood pressure.
It’s important to know the early warning signs of IgA nephropathy — especially blood in the urine — so you can talk with your healthcare provider and get care that may prevent complications. Without treatment, IgA nephropathy can lead to chronic kidney disease (CKD) and, in some cases, kidney failure.
In IgA nephropathy, blood in the urine can range from microscopic — invisible to the naked eye and seen only with a lab test — to very noticeable. Your urine may turn pink, brown, or cola-colored, known as gross hematuria or visible hematuria.
In the disease’s early stages, you might not notice any blood in your urine. In fact, it can take 10 years or more for visible symptoms to appear. Some people don’t know they have blood or protein in their urine until it shows up in a routine medical test. Some may first notice darker or discolored urine after an illness like a sore throat, cold, or upper respiratory infection.
Many conditions can cause microscopic hematuria — it doesn’t automatically indicate IgA nephropathy. Still, some researchers believe that it could be an early sign of the disease.
Studies report that microscopic hematuria is found in 70 percent to 100 percent of children and young adults with early-stage IgA nephropathy. If test results often reveal blood in the urine, it may be worth further investigation.
In IgA nephropathy, the kidneys’ glomeruli become inflamed and damaged. This happens because the body makes abnormal IgA antibodies that form deposits in the kidneys, triggering inflammation.
Eventually, the damaged glomeruli may allow red blood cells to leak into the urine and cause microscopic hematuria. These red blood cells may appear misshapen, which tells health professionals that the blood is coming from inflamed glomeruli, not the urinary tract.
Researchers believe that ongoing microscopic hematuria not only contributes to glomerular damage but may also lead to proteinuria and play a role in disease worsening over time.
Gross hematuria is sometimes caused by worsening inflammation and injury in the kidneys. More often, however, people with IgAN have visible hematuria after an illness, especially an upper respiratory infection. Common triggers include tonsillitis, HIV, hepatitis B, and COVID-19.
Although the primary symptom of IgA nephropathy is a change in urine color, other urine symptoms can appear. For example, your urine might look foamy or frothy — an indication that protein is leaking into it. Like hematuria, proteinuria can be an early sign of IgA nephropathy.
High levels of protein in the urine can also raise your risk of heart problems, including heart failure, stroke, and heart attack.
Research is mixed on whether hematuria means that IgA nephropathy is progressing. Some studies show that people with microscopic hematuria and mild proteinuria often have a favorable prognosis (outcome). They’re also more likely to have few symptoms. However, high levels of protein in urine may worsen prognosis.
Other studies suggest that microscopic hematuria is a risk factor for disease progression. Even so, with the right treatment, about half of people with IgA nephropathy experience remission (a period of improved symptoms).
Bloody or dark urine can be alarming, but hematuria doesn’t always mean IgA nephropathy is getting worse — or even that you have IgAN. Blood in the urine can also be caused by:
About half the time, healthcare providers can’t find a clear cause for hematuria.
If you see blood in your urine, it’s important to schedule an appointment with your doctor or nephrologist. You should also reach out if you experience:
Your healthcare provider may do a physical exam, ask about your symptoms, and order urine and blood tests. If you haven’t already been diagnosed with IgA nephropathy, they may recommend a kidney biopsy. This procedure is the gold standard for diagnosing this condition — it looks for IgA deposits in your glomeruli and assesses any kidney damage.
Treatment for IgA nephropathy often includes medications such as:
You may also be advised to make lifestyle changes, such as exercising regularly, cutting back on salt, and quitting smoking, to protect your kidney health. The key, though, is getting prompt treatment to help slow or even prevent kidney damage. In more advanced cases, people may need dialysis or a kidney transplant.
On myIgANteam, people share their experiences with IgA nephropathy, get advice, and find support from others who understand.
If you’ve been diagnosed with IgAN, how does hematuria affect you? Let others know in the comments below.
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