Can Having IgA Nephropathy Affect How Long You Live?

IgA nephropathy, also known as Berger’s disease, is a condition where the immunoglobulin A (IgA) protein builds up in the kidneys and causes inflammation. The condition can worsen over time, leading to kidney failure, which can shorten life expectancy.

A study from the United States found that people with IgA nephropathy lived about 10 years fewer than expected. The average age of death was around 66 years, compared to 76 years in the general population.

The impact on life expectancy can vary depending on where you live and your background. For instance, in Sweden, research found that people with IgA nephropathy lived about six fewer years than the general population. The risk of death was highest in the first year after diagnosis, and most deaths occurred after kidney failure developed.

It’s important to remember that these numbers are averages from large groups of people. Your individual outlook depends on many factors, including if and when kidney failure, also called end-stage renal disease, develops. About 1 in 4 people with IgA nephropathy develop kidney failure within 10 years. Many experience kidney failure in their 40s and 50s, which can shorten life expectancy.

Several factors can influence how IgA nephropathy affects life expectancy. Some you can control, while others you cannot:

• Kidney function at diagnosis: How well your kidneys are working when you’re first diagnosed is one of the most important factors affecting life expectancy. People diagnosed with kidney function below 60 (measured by the estimated glomerular filtration rate, or eGFR test) face much higher risks of kidney failure and shorter life expectancy. But people who are diagnosed early, before significant kidney damage occurs, tend to have better long-term outcomes.
• Other health conditions: Having additional health problems like diabetes or heart disease can create complications and reduce life expectancy. High blood pressure that’s not well controlled can also make the disease progress faster.
• Age at diagnosis: IgA nephropathy can occur at any age. People diagnosed at a younger age may have fewer health problems, which may mean a better outlook. Older adults may face more complications and higher risks of both kidney failure and shorter survival.
• Protein levels in urine: If tests show proteinuria, or a high amount of protein in your urine, it usually means your kidneys are under more stress. With the increased stress, there’s a higher chance the disease will worsen more quickly. But treatment to lower protein levels can protect your kidneys and improve your outlook.
• Treatment response: Medications that control blood pressure, such as angiotensin-converting enzyme (ACE) inhibitors or angiotensin receptor blockers (ARBs), are often used in IgA nephropathy to help protect the kidneys. How well you respond to these medications and other treatments can affect life expectancy.
• Lifestyle: Taking care of your overall health can help manage IgA nephropathy, reduce the risk of complications, and potentially slow the progression of the disease. Lifestyle changes that can help include following a low-sodium diet, maintaining the weight you and your doctor decided was optimal for you, and getting regular exercise. Avoiding smoking and limiting alcohol are also important for kidney health and your general well-being.

IgA nephropathy gradually progresses, but it doesn’t follow the same timeline for everyone. In some people, the progression is slow and steady, and they may live for years without serious complications. For others, the disease can worsen much faster, with kidney failure developing in just a few months.

How Will Symptoms Change as the Disease Progresses?

In the early stages, you might not notice any symptoms. Instead, many people are diagnosed during routine tests that show protein or blood in the urine. 

As IgA nephropathy progresses, inflammation in the kidneys can lead to a decline in kidney function. You may experience symptoms like:

• Swelling in your legs, ankles, or around your eyes
• High or more elevated blood pressure
• Hematuria (blood in your urine)
• Pink, dark-brown, or cola-colored urine
• Foamy urine (a sign of proteinuria)

If the disease progresses to end-stage renal disease, symptoms may include:

• Severe fatigue
• Nausea
• Difficulty breathing
• Dry, itchy skin

How Fast Will It Progress?

Predicting how fast IgA nephropathy will progress is one of the biggest challenges doctors face. They rely on kidney function tests, urine protein levels, and kidney biopsy results to help estimate risk, but these tools aren’t perfect. New research is looking at better ways to track progression, like blood or urine markers and imaging tools.

Can Treatment Help Slow the Progression?

Treatments can help slow the progression, but there’s no cure for IgA nephropathy.

Typical treatment: ACE inhibitors and ARBs, are often the first line of defense. These medications help lower the pressure inside the kidneys and reduce protein loss in the urine, which can help slow damage. Lifestyle changes also play an important role in managing the disease and potentially slowing its progression.

Other treatments: In some cases, immunosuppressants and steroids may be used if the disease is progressing quickly. Some specialists prescribe statin medications to help protect the heart and blood vessels. If kidney function becomes severely reduced, dialysis (a machine that filters the blood) or a kidney transplant may be needed. 

The future of treatment: New therapies that target different phases of the disease process are also being studied, which may help improve outcomes for people living with IgA nephropathy. Talk to your doctor about available clinical trials.

A diagnosis of IgA nephropathy can come with a lot of unknowns, especially early on. While this condition is serious, many people find ways to cope and maintain a good quality of life. You can try the following strategies to get support and improve your quality of life:

• Lean on family or friends for emotional support and practical help.
• Connect with support groups to talk to people who understand what you’re experiencing.
• Talk to a counselor who works with people with chronic health conditions may help you manage any feelings of worry, frustration, or sadness.
• Journal, do gentle exercises, or practice mindfulness to support day-to-day well-being. Ask your healthcare team about mental health resources.
• Work with your medical team to establish routines for medications and appointments that fit your lifestyle.
• Focus on the things you can influence, such as following your treatment plan, making healthy lifestyle choices, and staying informed about your condition.