IgA nephropathy

What is IgA nephropathy?

IgA nephropathy (nuh-FROP-uh-thee) is a disease that causes inflammation (swelling) and damage to your kidneys. Inflammation is the body's natural response to injury and infection.  In IgA nephropathy, proteins that are made by your immune system (immunoglobulin A or IgA) get into your kidneys.  IgA proteins are antibodies that normally protect us from infection. These proteins build up and form clumps inside the filters of the kidneys that clean your blood (glomeruli). Over time, this buildup causes inflammation and damage to the glomeruli and lowers your kidneys' ability to filter waste and fluid from your blood. Kidney damage from IgA nephropathy can be serious and lead to: 

• Chronic kidney disease (CKD)
• Kidney failure (also called end-stage renal disease or ESRD and end-stage kidney disease or ESKD)
• Death

It is one of the most common causes of kidney disease, behind high blood pressure and diabetes. IgA nephropathy is also known as Berger's disease.

What are the signs and symptoms of IgA nephropathy?

Kidney damage from IgA nephropathy can take years to develop. Some people with IgA nephropathy do not have any symptoms for 10 years or more, and some people can have IgA nephropathy and not know it. Others can have a more aggressive version that is diagnosed more quickly.

The first signs of IgA nephropathy are usually blood or protein in your urine (pee). You may notice:

• Urine that is pink or the color of tea or cola, especially after you have had a cold, sore throat or respiratory infection
• Blood in your urine that you can see
• Foamy urine
• Have swelling in your hands or feet or around your eyes

Doctors sometimes find signs of IgA nephropathy during a routine urine test, when they see blood or protein in your urine under a microscope. 

You may also:

• Feel weak and tired
• Feel like you have a cold or the flu
• Have pain in your lower back or sides
• Have swelling in your hands or feet
• Have high blood pressure 

What causes IgA nephropathy?

Doctors do not know exactly what causes IgA nephropathy. It is not clear why some people have it while others do not, but a lot of research is happening to better understand the cause.  Currently, it is thought that the body is making too much of an unusual type of antibody, IgA.  That abnormal IgA is more likely to clump together with other antibodies and deposit in the kidney.  Once in the kidney, it triggers a reaction of the immune system which damages the kidney tissue.   

IgA nephropathy is also more common in: 

• Men 
• People of Asian or European descent 
• Native American people of the Zuni and Navajo tribes 

IgA nephropathy can be passed down through your family, and doctors think it is genetic. However, most cases happen in people with no family history of the disease.  In some people who have other health conditions may have a higher chance of having it, including:  

• Celiac disease: An allergy to gluten that tends to run in families (gluten is a protein found in wheat, barley and rye)  
• HIV (human immunodeficiency virus) infection 
• Cirrhosis: A liver disease in which scar tissue replaces normal liver tissue 

How can doctors tell if I have IgA nephropathy?

If doctors find protein or blood in your urine after having your urine tested, they may suspect IgA nephropathy. Because other kidney problems can cause protein and blood in your urine, the only way doctors can be sure you have IgA nephropathy is by performing a kidney biopsy. A kidney biopsy is a procedure where doctors take out a very small piece of tissue from your kidneys to look at it under a microscope. 

You can find out you have IgA nephropathy at any age, but 8 out of 10 (80%) people with IgA nephropathy are diagnosed between ages 16 and 35. IgA nephropathy is rare in children.

How do doctors treat IgA nephropathy?

There is no cure for IgA nephropathy. The goal of treatment is to slow the damage to your kidneys and delay or prevent kidney failure. Your doctor will work with you to make a treatment plan.  

Doctors treat IgA nephropathy with medicines that:  

• Lower inflammation  

• Help control your blood pressure 

• Help remove extra fluid from your body 

• Lower your cholesterol  

Your doctor may also recommend that you: 

• Make changes in what you eat to lower the amount of protein, fat, sodium and cholesterol you take in 

• Take in more or less fluids through drinks and some foods  

• Lose weight 

Your doctor will also do regular tests to keep track of your kidney health over time.  With these measures, many people will see a reduction in the amount of protein that is in the urine. 

Learn more about kidney function tests that your doctor may order such as blood tests, urine tests, kidney ultrasound and kidney biopsy. 

There are new treatments recently approved by the FDA to help treat IgA nephropathy. Talk with your doctor about the latest research in IgA nephropathy. You may have options that you did not have before.  

Recently FDA-approved treatments 

There are 2 new FDA-approved treatments for IgA nephropathy. Both lower the level of protein in urine (proteinuria), and work well in adults who have a high chance of their IgA nephropathy getting worse.  

These medications may be prescribed by your doctor.  Talk to you doctor and healthcare team to learn more about your options. There are also ongoing clinical trials that are testing how well other treatments work which may be FDA- approved and available for prescription in the future.

What is the treatment for kidney failure from IgA nephropathy?  

If you have kidney failure from IgA nephropathy, you will need to go on dialysis or have a kidney transplant. A transplant is not a cure for any type of kidney disease, but is considered a treatment. After a transplant, it is possible the new kidney can eventually become damaged because of IgA nephropathy.

How do people with IgA nephropathy do?

IgA nephropathy affects different people in different ways. You can learn more about your risk for IgA nephropathy here. Some people have little or no effect on their health from IgA nephropathy, while others develop kidney disease or kidney failure. 

How can I prevent IgA nephropathy?

Because it is not clear what causes IgA nephropathy, it is not clear how to prevent it. However, research has shown that for people with IgA nephropathy, medicines that help control your blood pressure and prevent protein from being lost through your urine can help slow damage to your kidneys. 

Do I need to make changes to what I eat if I have IgA nephropathy?

What you eat and drink is very important when you have kidney disease. There are many things to consider depending on your current level of kidney function, such as: 

• How and what you eat  

• Different nutrients 

• The amount of fluid you consume 

A dietitian (an expert on food and nutrition) can help you make a kidney-friendly eating plan that works for you. 

Your doctor may also recommend that you: 

• Make changes in what you eat to lower the amount of protein, fat, sodium and cholesterol you take in 

• Take in more or less fluids through drinks and some foods  

• Lose weight 

Click here to find healthy kidney-friendly recipes.

How does IgA nephropathy affect mental health? 

Living with IgA nephropathy can affect your mental and emotional health. Depression, anxiety and other mental health issues are common in people with kidney disease. If your kidney damage gets worse, you may feel more stress. For example, if you are on dialysis, stressors may include: 

• Cost of dialysis 
• Time needed for dialysis 
• Feeling like a burden to others 
• Changes in your job 
• Limits on what you can eat 
• Fear of pain 

Find healthy ways to cope 

It is normal to have stress, anxiety and depression when facing difficult situations. If you notice changes to your mental health, these activities may help you feel better: 

• Be active for at least 30 minutes most days of the week. Exercise can lower feelings of depression and anxiety and improve the way you think, learn and remember things. 
• Get enough sleep. Aim for 7-8 hours a night and try to go to sleep and wake up at the same time every day. Poor sleep affects mood, energy, attention span and your ability to think clearly. 
• Tap into your faith. For some, connecting with religion and spirituality may serve as a valuable way to cope with mental health issues. Your faith community can provide a group of people that you can rely on when you are feeling down. 
• Explore your creative side. Pick up an old hobby or try something new such as painting, crafting or sewing. When engaged in something you enjoy, it can lower stress and release feel-good chemicals in your brain. 

Talk to a professional 

If you want to talk to a professional, ask a member of your treatment team for a referral to a mental health therapist, counselor or social worker.  

These professionals are trained to help you:  

• Understand and process your emotions 
• Improve your coping skills  
• Maintain healthy relationships with loved ones  
• Navigate everyday life with chronic disease 
• Advocate for your needs 

Many health insurance providers cover mental health services. Call your health insurance provider to find out what your health insurance plan includes and get a list of in-network mental health providers in your area. 

Find a support group 

Having a chronic disease like IgA nephropathy can feel isolating. But you are not alone. One of the best ways to cope with a major life change is to connect with people who are going through a similar experience.   

Benefits of joining a support group include:  

• Being able to talk openly and honestly with people who understand what you are going through 
• Learning tips for managing IgA nephropathy from people who have been living with it for longer than you 
• Learning more about IgA nephropathy and opportunities for patients, such as clinical trials and new treatments 
• Finding new ways to cope 
• Feeling empowered and supported by your new community 
• Making new friends 

Visit the IgA Nephropathy Foundation and National Organization for Rare Disease (NORD) to learn more about support groups and other community-based resources near you. 

Learn more about mental health and kidney disease and where to go for support.