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IgAN affects people in different ways. Keeping a journal of the way you’re feeling and tracking your symptoms is a really useful way to help your healthcare team. You can also use IgAN Friends to share your experience with symptoms and how you’ve learnt to manage them.

“I didn’t experience any initial symptoms. I did a routine blood test, and urine exam. From the urine exam, my doctor told me that my protein was a little bit high.”

Akwah, IgAN Patient, Italy

Here are a few of the most common symptoms:

Pink, tea or cola-coloured urine

This is called haematuria and it happens when your urine contains traces of blood.¹ It can be hard to see and often occurs during a cold, sore throat, or other respiratory infection.^1,2

Foamy or frothy urine

When your kidneys are healthy, they stop most proteins in your blood from leaking into your urine.¹ However, when your glomeruli are damaged, protein leaks out which makes urine look foamy. This is called proteinuria.³

Swelling

Once your glomeruli are damaged, it can stop your body from healthily absorbing fluid. This can cause swelling called oedema. You might notice this in your lower body, and sometimes your hands or face.¹

Pain

Some people get pain where their kidneys are in the sides of their body,^3,4 or flank. Others may experience pain from swelling in their lower body, hands or face.⁵

High blood pressure or hypertension

IgAN can increase your blood pressure. This is because of kidney damage, and the build-up of waste products and excess fluid in your bloodstream.³ It’s important to keep an eye on this because hypertension increases your risk of having a stroke and cardiovascular disease.⁶

How do symptoms change over time?

Some people may develop kidney failure after about 10 to 20 years of having IgAN.¹ This means kidneys no longer work as well as they should. People with kidney failure might experience:^1,7

Little or no urination
Fatigue
Drowsiness
Numbness
Weight loss
Loss of appetite
Nausea and vomiting

Patients with kidney failure sometimes need dialysis.⁷ This is where a machine outside of your body filters your blood for you.¹ If your kidney function is very low, a kidney transplant might also be an option.⁷

You should always check with your doctor if you’re experiencing new symptoms, or your current symptoms are getting worse.

For more information on symptoms, check out this page on ERKNet.

References

NIDDK. IgA Nephropathy. Available at: https://www.niddk.nih.gov/health-information/kidney-dipsease/iga-nephropathy. Accessed May 2023.
NORD. IgA Nephropathy. Available at: https://rarediseases.org/rare-diseases/iga-nephropathy. Accessed May 2023.
Mayo Clinic. IgA Nephropathy. Available at: https://www.mayoclinic.org/diseases-conditions/iga-nephropathy/symptoms-causes/syc-20352268. Accessed May 2023.
Merriam-Webster Dictionary. Flank Definition & Meaning. Available at: https://www.merriam-webster.com/dictionary/flank. Accessed May 2023.
Cleveland Clinic. Edema. Available at: https://my.clevelandclinic.org/health/diseases/12564-edema. Accessed May 2023.
Wajngarten M, Silva GS. Eur Cardiol. 2019 Jul 11;14(2):111-115.
Mayo Clinic. End-Stage Renal Disease. Available at: https://www.mayoclinic.org/diseases-conditions/end-stage-renal-disease/symptoms-causes/syc-20354532 Accessed June 2024.