Diagnosed with IgAN? Here are 4 tips to help you manage your kidney health

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IgA nephropathy, also called IgAN, is a type of kidney disease caused by inflammation of the glomeruli. The glomeruli are the small blood vessels that help your kidneys filter out waste from the blood. You also may hear IgAN referred to as Berger disease.

IgAN starts with the development of an irregular antibody called immunoglobulin A (IgA), which has less sugar than its usual form. The body’s immune system reacts to this sugar-deficient IgA, resulting in the formation of complexes made of natural antibodies and sugar-deficient IgA. The immune complexes then deposit in the glomeruli, where they trigger an inflammatory response.

This inflammatory response can result in blood and protein in the urine, which can make urine look cola or tea colored, or foamy. Additional symptoms  that develop may include high blood pressure, swelling of the lower extremities and high cholesterol. If not treated, the process progressively leads to decreased kidney function and eventually kidney failure.

Although IgAN is a common form of kidney disease, it’s hard to know exactly how many people are living with IgAN. Some people may never be diagnosed because they don’t experience symptoms, or they have only very minor symptoms. Other people will develop significant complications and need treatment. One systematic review looked at international data from 1980 through 2010 and estimated that IgAN affects at least 2.5 out of every 100,000 adults. But a definitive diagnosis requires a kidney biopsy.

If you or a loved one has been recently diagnosed with IgAN, it’s important to know there are resources, effective treatments and support available. Below, Fernando C. Fervenza, M.D., Ph.D., kidney specialist and IgAN expert at Mayo Clinic in Rochester, Minnesota, discusses tips to best manage your diagnosis moving forward.

Lifestyle, diet and your kidney health

Although IgAN is not preventable, there are steps you can take to manage your condition and help keep your kidneys as healthy as possible.

In addition to standard health recommendations such as exercising regularly, maintaining a healthy weight and avoiding tobacco products, Dr. Fervenza recommends the following lifestyle tips:

• Adopt a low-sodium diet. Dr. Fervenza says staying on top of your blood pressure is essential, as uncontrolled hypertension can speed up loss of kidney function. He recommends a low-salt diet, limiting sodium intake to less than 2 grams a day. “Sodium intake not only affects blood pressure control but also the degree of protein excretion in the urine,” he adds. Changing your eating habits can be challenging, so ask your healthcare team about the best diet for you and how to maintain a healthy routine.
• Track your blood pressure at home. Knowing your numbers can help you and your care team keep an eye on any changes over time.
• Consider a low-protein diet. This style of eating may help IgAN from getting worse.
• Drink alcohol in moderation — if at all. Alcohol can raise your blood pressure and can change how certain blood pressure medications work. Ask your doctor about any potential medication interactions and weigh the pros and cons of alcohol use.
• Avoid medications that can harm the kidneys. Some common medications, such as pain relievers called nonsteroidal anti-inflammatory drugs, can be harmful to the kidneys. These medications also are called NSAIDs. Ibuprofen and naproxen are common NSAIDs. Ask your kidney doctor for a list of medications to avoid.

Seek out support

Learning to live with a chronic condition can be challenging and, at times, isolating. Support groups can offer a space to talk about your concerns, connect with resources and find other people who know what you are experiencing firsthand.

There are several support groups and advocacy organizations that focus on IgAN and other kidney diseases. The National Kidney Foundation offers a free information help line, online community forums, peer mentorship and doctor Q&A’s. Navigate IgAN has comprehensive educational guides you can read and share with loved ones, as well as a community support directory. Finally, the IgA Nephropathy Foundation has monthly virtual support groups, a list of Facebook support groups and caregiver resources.

You or your loved ones also may consider seeking the support of a mental health professional. You can read Mayo Clinic’s guide to finding the right mental health professional here. Mayo Clinic also has a guide on mental health services for families.

Find the right IgAN specialist

IgAn is a complex and chronic condition — and that means you will need long-term support from not just your friends and family but also from your care team. Even for people without symptoms, it is important to work with your healthcare professional to do regular testing and monitor for any signs of disease progression.

In particular, Dr. Fervenza recommends seeking out the care of a kidney specialist, called a nephrologist, who is experienced with IgAN. Since IgAN can affect people differently, and there are so many treatment options available, Dr. Fervenza says it’s important to work with a specialist who has expertise in IgAN treatment and care.

Critically, the right specialist is also someone you feel comfortable speaking with and who takes your concerns seriously.

Your primary care doctor can refer you to a nephrologist or you can use the IgA Nephropathy Foundation’s online, zip code-based directory to find a health professional near you.

You also may consider getting a second opinion as you weigh your treatment options or as your condition progresses.

Talk to your care team about your IgAN diagnosis and treatment

There are a number of treatment options, including medication-based therapies, that can help manage IgAN and its symptoms. Treatments can slow disease progression and even induce remission. The best treatment plan is based on your specific situation and a variety of factors, including the results of your biopsy and urine tests, as well as the presence and severity of any symptoms.

Fully understanding your treatment options often requires a learning curve. Your care team can help you weigh the pros and cons of treatment strategy, stay on top of promising new developments and, if you are interested, connect you with clinical trials. To help make the most out of your appointment — and ensure your concerns are being adequately addressed — consider creating a list of questions for your care team prior to your visit. Navigate IgAN also offers a free doctor discussion guide and test result tracking tool that can help you manage your appointments over time.

You also should be prepared to discuss your symptoms, lifestyle habits, other health conditions, and any medications or supplements you may be taking.

The following questions can help get you started:

• What exactly do my test results mean? Do I need any other tests?
• How do my test results impact my treatment options?
• How likely is my IgAN to progress? How quickly do you expect it to progress?
• What are the treatment options available?
• What are the pros and cons of each option? Consider asking about effectiveness, side effects, insurance coverage and cost.
• What lifestyle changes can I make? What do I need to do to manage my kidney health?
• Should I track my blood pressure or other numbers between appointments?
• What resources, websites, support groups or services can you refer me to?

Mayo Clinic does not endorse companies or products. Advertising revenue supports our not-for-profit mission.

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