Getting an IgAN diagnosis
isn’t the last piece–
it’s the first
Diagnosing what can
often be a silent, unpredictable, and misunderstood condition.
Being diagnosed with IgA nephropathy (IgAN) can feel overwhelming. But understanding what’s happening—
and what comes next—can help you feel more in control.
An IgAN diagnosis involves steps that help you and your doctor make informed decisions about your care.
Everyone’s IgAN diagnosis
journey is different
Understanding each step of the process may make it easier to navigate your diagnosis, but everyone’s journey is different. If you have concerns, talk to your doctor about the next step for you.
Symptoms may include:
Foamy urine (Proteinuria)
This occurs when damaged kidney filters can’t stop protein from passing into the urine. Constant proteinuria is a sign of kidney stress and IgAN progression. It is the most common symptom
of IgAN.
Blood in urine (Hematuria)
It is never normal to have blood in your urine. Damaged kidney filters can’t stop red blood cells from leaking into urine. Blood in urine can cause pee to appear pink or cola-colored, especially after sickness or exercise.
High blood pressure (Hypertension)
The kidneys help regulate blood pressure, and when they aren’t functioning as well, high blood pressure can develop. It can also cause more kidney damage.
Swelling
(Edema)
When kidney function declines, excess fluids build up in the body, leading to noticeable swelling in the hands, lower legs, feet, or face.
Severe tiredness (Fatigue)
As damaged kidneys begin to work harder, waste products can accumulate in the blood. This can cause tiredness and difficulty concentrating. Anemia, which means you have fewer red blood cells than normal, is a common complication of IgAN. It can also make you feel very tired.
Lower back or side (flank) pain
Some people report discomfort in the kidney area (lower back or flank). It is thought that this could be due to inflammation, swelling, or increased pressure within the kidneys.
Even if your symptoms
aren’t noticeable,
IgAN may still be
progressing
Confirming IgAN
with a kidney biopsy
Because IgAN symptoms can look like other problems, your doctor will need to rule out other causes before diagnosing IgAN.
A kidney biopsy is the only way
to definitively diagnose IgAN.
A kidney biopsy is a procedure typically done in an outpatient setting. During the procedure, a needle is inserted through the skin to remove tissue from your kidney.
The tissue is examined for IgA antibodies, as well as inflammation and scarring (fibrosis) in the kidneys. Most people get results within a few days.
After an IgAN clinical diagnosis, monitoring lab test numbers over time is important. However, even with consistent numbers from lab test results, you may still be at risk for disease progression.
What you can do
It’s important to remain hopeful and stay informed about your health.
Getting an IgAN diagnosis can take time because it often takes multiple tests and visits to different specialists. Also, research shows some people may wait even longer because of discrepancies in health care.
That’s why it’s important to be proactive and monitor how you feel, ask questions, and speak up for yourself during your health journey.
While on your path to diagnosis, here are a few ways
that may make you feel more in control:
Keep track
of symptoms
Watch for foamy urine, colored urine, swelling, severe tiredness, and high blood pressure, and note any changes over time.
Prepare for
appointments
Write down your questions and concerns ahead of time to help guide your conversation with your doctor.
Manage
stress
Try mindfulness, light exercise, or talking with someone you love. If you notice blood in your urine or other signs of kidney issues, talk to your doctor.
What comes next
after getting an
IgAN diagnosis
Managing IgAN is a continuous journey that involves regular monitoring. But taking proactive steps at home may help you stay on top of your kidney health between doctor’s visits.
Key steps to help you on your journey:
Create a care plan
Work with your doctor to set goals, track symptoms, and know what to watch for.
Keep it updated
Regular check-ins may help fine-tune your care plan as your needs change.
Stay involved
Monitor your kidney health, follow lifestyle recommendations, and bring questions to every visit.
Managing IgAN
is the next step
in your journey
Monitoring for IgAN
progression through tests
Early and regular testing may provide information that can help you preserve your kidney health. Blood and urine tests can help check how well your kidneys are working and for signs of IgAN, like high protein levels in urine (proteinuria).
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