Seeing blood in your urine can be concerning. For people living with immunoglobulin A nephropathy (IgA nephropathy, also called IgAN or Berger’s disease), blood in the urine is a common symptom and may be one of the first signs of kidney problems.

Blood in the urine can have many causes, and it doesn’t always mean there’s a serious issue. However, when it happens in people with IgA nephropathy or those at risk for chronic kidney disease, it’s important to understand how this symptom may be connected to kidney health. Learning more can help you talk with your healthcare providers about possible causes, tests, and next steps.

The Connection Between IgAN and Blood in the Urine

IgA nephropathy is a kidney disease that’s connected to your immune system. One of the proteins your immune system makes to fight the infections is called immunoglobulin A. When your body doesn’t make this protein normally, you can end up with deposits of it in your kidneys.

Specifically, IgA ends up in your glomeruli, which are the tiny blood vessels that do the kidneys’ filtering work. Over time, as the abnormal IgA builds up in these filters, they may become inflamed and not function properly. They become leaky and may bleed, which can lead to blood in your urine. You may or may not be able to see it, depending on how much blood there is. If you can see it, your urine may range from pink to tea-colored to the color of dark soda.

Blood in your urine (also called hematuria) is often the first sign of problems with your kidneys. Many people don’t experience symptoms for years. Sometimes the condition is found through a routine medical screening that picks up on microscopic amounts of blood in your urine that you can’t see.

Blood in the Urine and IgAN Prognosis

The research is divided on whether having blood in your urine can affect your overall prognosis (how this condition is expected to affect your health over time) when you’re living with IgAN.

A 2017 study found that people who had protein in their urine but not blood had less risk of increased kidney damage and decreased kidney function than people who had both. The researchers noted that blood in the urine indicates active kidney inflammation, and more research needs to be done to understand this sign of IgAN better.

Another small study followed 63 people living with IgA nephropathy. The researchers found that in people who had low levels of protein in their urine and whose kidneys were still working well, blood in the urine wasn’t linked to worsening kidney disease over time. This suggests that for some people with IgAN, blood in the urine alone may not affect how the disease progresses.

However, another study found that, even when you have so little blood in your urine that it’s not visible, it still means that IgAN is active in your body and that there’s inflammation in your glomeruli. These researchers also found that the more blood there is in your urine and the longer you go with blood in your urine, the more likely IgAN is to worsen and even lead to kidney failure (also called end-stage kidney disease, end-stage renal disease, or ESRD). They noted that getting rid of blood in your urine usually means you’re responding well to treatment and are likely to have a better outcome.

Taken together, these studies suggest that blood in the urine doesn’t have the same meaning for everyone living with IgA nephropathy. Its importance depends on other factors, such as protein levels in the urine and how well the kidneys are working. That’s why it’s important to talk with your nephrology team about any changes, so they can assess what these signs mean for your individual situation.

Other IgAN Signs and Symptoms

Some people don’t have blood in their urine related to IgAN, or they experience other symptoms long before they see blood in their urine. If this is your experience, you might have other symptoms like:

• Edema (swelling), particularly in your hands and feet
• Proteinuria (protein in your urine), which may make your urine foamy
• Hypertension (high blood pressure)
• Pain in your back where your kidneys are, right below your ribs
• Unexplained tiredness or weakness
• Swollen or puffy eyes, particularly when you wake up in the morning

If you start experiencing any of these symptoms for the first time or they return after going away for a time, talk to your nephrologist as soon as possible. They’ll help you figure out what’s going on so you can get the diagnosis and treatment you need.

Diagnosing IgAN

If you can see blood in your urine, it’s time to see a healthcare provider. If protein or blood are found in your urine during routine testing, your medical provider will be in touch. Most of the time, they’ll send you to a doctor who specializes in the kidneys, called a nephrologist.

Your nephrologist will use several tests to diagnose IgAN. They may run additional urine tests, as well as blood tests. Both of these tests look for other signs that your kidneys aren’t able to filter the way they should. They may also ask you to have an iothalamate clearance test. This test uses a contrast agent that can be tracked from outside your body to see exactly how well your kidneys are filtering.

The definitive test for IgA nephropathy, though, is a kidney biopsy. For the biopsy, they’ll take samples of your kidney tissue using special needles. Then they’ll send the samples to be examined. If they can see the buildup of immunoglobulin A in your glomeruli, they’ll know for sure that you should be diagnosed with IgAN.

Managing and Treating IgAN

It’s important to know that being diagnosed with IgAN doesn’t mean you’re in kidney failure or that your kidneys will ever get that bad. People have different experiences with IgAN. Some people’s kidney function stays the same for years, others have a slow decrease in kidney function, and some experience a quick decline in kidney function. Your nephrologist will do everything they can to stabilize your kidneys.

This usually means meeting with your nephrology team regularly for testing and analysis of your kidney function. Your doctor will tell you how often they want to see you and what tests you should have done at different times. Some people find that regular testing is all they need because their kidneys are stable.

Lifestyle Changes for IgAN

Even if your kidneys are working well, your healthcare professional may ask you to make lifestyle changes to ensure your kidneys have the support they need. The changes you need to make will depend on your life and your kidneys, but they may include:

• Monitoring your blood pressure at home
• Taking steps to lower your blood pressure, like exercising more or reducing your salt intake
• Maintaining a healthy body weight
• Consuming less protein
• Not taking supplements unless your doctor specifically tells you to
• Lowering your stress level
• Getting seven or eight hours of good sleep every night
• Managing other medical diagnoses, especially if they can affect your kidneys
• Taking steps to prevent infections

All these lifestyle changes can help your kidneys work better for longer. If you need support making these changes, your doctor can refer you to other medical professionals who can help you implement them safely.

Medications for IgAN

Your nephrology team may also give you prescription medications that can keep your kidneys stable and help treat symptoms of IgA nephropathy. These can include medications to manage blood pressure (ACE inhibitors and angiotensin-receptor blockers, or ARBs), medications that suppress your immune system (immunosuppressants), and medications to help with swelling (diuretics), as well as omega-3 fatty acids and cholesterol medicines. Note that you shouldn’t buy omega-3 fatty acids (usually fish oil) off the shelf and take them unless your doctor tells you to do so.

There are new treatments being approved by the U.S. Food and Drug Administration (FDA), and many others are in clinical trials. Ask your doctor if these may be options for you.

You may eventually need dialysis or a kidney transplant to keep toxins from building up in your body. Your doctor will let you know when the time is right to pursue those treatments.

These medications and treatments won’t cure IgAN, but they can help your kidneys work as well as possible and keep your quality of life high too. Talk to your doctor if you’re having new or persistent symptoms or if you think your medications aren’t working or aren’t working as well as they used to.

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