Lupus nephritis symptoms, treatment and complications

What is Lupus nephritis?

Lupus is an autoimmune disease, which is a disease that causes your immune system (your body's defense system) to attack healthy cells and tissues. Lupus can affect many parts of your body, including your kidneys. When lupus causes inflammation (swelling) and damage to your kidneys, it is called lupus nephritis. 

Over time, lupus nephritis can cause permanent kidney damage, chronic kidney disease (CKD) and, in some people, kidney failure. About 50% of adults with lupus will develop lupus nephritis. 

What are the signs and symptoms of lupus nephritis?

When lupus nephritis is in the early stages, you may not have any symptoms. This is one reason that regular blood and urine testing is important if you have lupus. As kidney damage gets worse, you may start to notice symptoms such as: 

• Weight gain caused by extra fluid
• High blood pressure
• Frequent urination, especially at night
• Foamy or bubbly urine (a sign of protein in your urine)
• Blood in urine
• Swelling in your legs, feet, ankles and sometimes your hands and face

You may also have symptoms related to lupus, such as:

• Fatigue
• Joint pain
• Joint swelling
• Muscle pain
• Unexplained fever
• Red rash on your face

Having these symptoms does not always mean you have lupus nephritis. If you have lupus, talk to your doctor if you notice new symptoms or changes in your health. Ask your doctor about your kidney health and how often your kidney health should be checked. 

How will I know if I have lupus nephritis?

Lupus nephritis may not cause symptoms at first, so regular testing is one of the best ways to find kidney problems early. Only people who have lupus can have lupus nephritis. If your doctor thinks that your lupus might be affecting your kidneys, they might order urine tests to check for protein and blood in the urine and blood tests to check your kidney function. 

Current guidelines recommend screening for protein in the urine at least every 6 to 12 months and when you have a lupus flare. 

The best way to know if your kidneys are being damaged by your lupus is to get your kidney function tested regularly. If you have lupus, talk to your doctor about test options and how often you should have these tests done. 

Finding and treating lupus nephritis early can help protect your kidneys from damage. If you have lupus but have not been told you have lupus nephritis, you should be tested at least every 6 to 12 months per current lupus guidelines. 

What are the stages of lupus nephritis?

There are six classes (or stages) of lupus nephritis based on what your kidney tissue looks like under a microscope. It's important to know that these are not the same as CKD stages, instead they are based on  how the kidney cells look under a microscope. Your doctor will take a small piece of your kidney by doing a biopsy and then they will examine it under a microscope. 

Looking under the microscope, your doctor will look for certain patterns and features that can tell them what kind of kidney damage you have. This helps them decide the best treatment plan for you. 

The classes of lupus nephritis are:

Knowing the class of lupus nephritis that you have can help your doctor decide the best treatment for you. During your appointment you can ask your doctor: 

• What class of lupus nephritis do I have?
• Does my biopsy show active inflammation, permanent scarring or both?
• How well are my kidneys working?
• How much protein is in my urine?
• What treatment do you recommend and why?
• How will we know if my treatment is working?

Who is at risk for lupus nephritis?

1.5 million Americans, and at least five million people worldwide, have a form of lupus. Anyone with lupus can develop lupus nephritis. Lupus nephritis occurs in about half of all adults with lupus. 

Lupus and lupus nephritis affect some groups more often than others. People who have a family member with lupus nephritis are also at a higher risk. If you have a family member with lupus, you should share this information with your doctor and ask if you need to be tested. Research has also found associations between APOL1 risk variants and kidney outcomes in some people with lupus nephritis. Many experts believe the cause of lupus is a combination of genetic and environmental factors. For example, having the APOL-1 gene can increase your risk of developing kidney disease and lupus nephritis.

• 9 in 10 people with lupus are women.
• Lupus is more common in Black women.
• About 50% of adults with lupus develop lupus nephritis.
• Lupus nephritis typically occurs in people aged 20-40 years.
• Blacks, Hispanics, and Asian Americans are more likely to have lupus nephritis than whites.

Talk with your doctor about your individual risk and whether you need additional testing.

What other organs can lupus affect? 

Lupus can damage organs other than your kidneys, including your brain, heart, lungs, skin, joints, eyes and others. If damage to your organs lasts for 6 months or longer, this damage is considered permanent, and it might affect your health. Because lupus can affect different parts of your body, tell your care team about new or changing symptoms.

How is lupus nephritis treated?

While there is currently no cure for lupus nephritis, the right treatment plan can make a difference. The treatment goals are to control inflammation, keep your symptoms from getting worse, protect your kidneys and lower your risk of permanent damage to your kidneys.

Since lupus causes your immune system to mistakenly attack your own kidneys, most treatments focus on calming that immune response. Your treatment will depend on your lupus nephritis class, how much inflammation and scarring are present, your kidney function, the amount of protein in your urine, your other health conditions and your treatment preferences. It will likely involve a combination of medicines to control your immune system and manage side effects. 

These often include:

• Steroids: to quickly reduce swelling and quickly lower inflammation. Because long-term or high-dose steroid use can cause side effects, your care team may try to reduce the dose as your lupus nephritis comes under control.
• Hydroxychloroquine (Plaquenil®) is commonly used to treat lupus and is generally recommended for people with lupus nephritis unless there is a medical reason they cannot take it.
• Immunosuppressants: To stop your immune system from attacking your own body. Different medicines or combinations of medicines may be recommended depending on your lupus nephritis and other health factors.
• Blood pressure medicines, such as ACEs and ARBs: To protect your kidneys and reduce the amount of protein leaking into your urine.
• Diuretics (water pills): To help your body flush out extra fluid and reduce swelling.
• Anticoagulants: To prevent blood clots, which you may be at a higher risk of if you have lupus nephritis. 

Targeted, FDA-approved treatments for lupus nephritis

Research in this area is progressing, and there are now FDA-approved treatments available for certain people with active lupus nephritis and are generally used as part of a combination treatment plan. 

These include:

• Belimumab (Benlysta®): An IV or injection immunosuppressant medicine approved for adults and children age 5 and older that prevents certain, harmful immune cells from forming. 
• Voclosporin (Lupkynis®): An oral medicine that binds to a specific protein and keeps it from causing an immune reaction and limiting the inflammation in your kidneys. 
• Obinutuzumab (Gazyva®): An IV medicine for adults that targets the specific immune cells contributing to kidney damage.

Ask your doctor which treatment options are appropriate for your type of lupus nephritis.

Managing kidney disease often means taking several medicines to help control blood pressure, diabetes and other related conditions. This page lists prescription assistance programs (PAPs) and resources that may help lower medicine costs for people living with chronic kidney disease (CKD) and end-stage kidney disease (ESKD). Learn more.

In addition to medicines, your doctor may recommend lifestyle changes to support your kidney health, such as:

• Eating kidney-friendly foods 
• Being active for at least 30 minutes, most days of the week 
• Maintaining a healthy weight
• Stop using tobacco products
• Avoid medicines or supplements that could harm your kidneys unless your doctor says they are safe
• Drink less alcohol (2 drinks a day for men, 1 drink a day for women) 

Ask your doctor before making major changes to your diet, medicines, or supplements.

Tracking Your Progress
To make sure your treatment is working, your care team will regularly monitor your kidney function and urine protein levels using blood and urine tests every 6-12 months depending on how well your kidneys are function it could be more often. With the right combination of therapies, many people are able to successfully reduce inflammation, control their blood pressure, and significantly slow down kidney damage.

What doctors are part of the lupus nephritis treatment team?

Because lupus can affect many different parts of your body, the lupus treatment team includes several health care professionals involved in your care. Many people with lupus see a rheumatologist, which is a doctor who specializes in autoimmune diseases. When lupus starts to affect your kidneys and you are diagnosed with lupus nephritis, ask for a referral to a nephrologist, or a kidney doctor. A nephrologist and rheumatologist will often work together to manage your treatment.

Every person's treatment team looks different depending on how lupus affects your health. Your care team may also include:

• Cardiologists, who treat issues that affect your heart and blood vessels.
• Dermatologists, who treat issues that affect your hair, skin and nails.
• Gastroenterologists, who treat issues that affect your digestive system and liver.
• Neurologists, who treat issues that affect your brain and nervous system.
• Ophthalmologists, who treat issues that affect your eyes and vision. They can perform eye surgery and prescribe glasses and contact lenses to correct vision problems.
• Pulmonologists, who treat issues that affect your lungs and other parts of your respiratory system.
• Perinatologists, or maternal fetal medicine specialists for high-risk pregnancy care.
• Pharmacists, dietitians, nurses and other healthcare professionals

Working with multiple doctors

Lupus can affect multiple parts of your body, so you will likely be working with multiple doctors. When you have several doctors, good communication between your healthcare professionals is important.

Tell each of your doctors about the other doctors you are seeing. Share what you know about the conditions you have, your recent lab results, any recent hospitalizations or changes in your health and medicines you take. If your doctors are not all part of the same network, it might not be easy for them to access this information. The more they know about your health history, the better they can work together and coordinate your care. Ask how you can help your care team share information and coordinate your care.

Download our guide on members of your lupus care team.

What is the outlook for lupus nephritis?

Treatment for lupus nephritis has improved, and many people are able to control the disease and protect their kidney function. 

However, lupus nephritis can cause permanent kidney damage and chronic kidney disease (CKD). Some people with lupus nephritis can develop kidney failure or end stage renal disease (ESRD) requiring dialysis or a kidney transplant. 

Regular monitoring and taking your medicines as prescribed are important even if you are feeling well. 

Between 1 and 3 out of every 10 people with lupus nephritis progress to ESRD. 

What can I do to make sure I am getting the treatment I deserve if I have lupus nephritis?

Navigating your care can be overwhelming when you have lupus nephritis. Even though doctors have limited time with patients, it is important that they listen carefully to your concerns and clearly answer questions you have. You should feel comfortable asking questions, because that will help you make shared, informed decisions about your care. Remember, you are your own best advocate! No one knows your body as well as you do. Shared decision-making means that you and your care team work together to choose a treatment plan that considers the medical guidelines as well as your goals, preferences and concerns. If you feel like a doctor is not taking your concerns seriously or you are uncertain about something they said, you have the right to get a second opinion from another doctor. Learn how to be your own advocate.

What resources are available that can help people cope with having lupus nephritis?

A lupus diagnosis can be overwhelming. It is a disease that many people do not know much about. Getting the right diagnosis is the first step to getting the care you need. Because lupus is a lifelong disease, it can impact your daily routine in different ways for the rest of your life. Physical symptoms, frequent doctor visits and financial stress can all impact your emotional well-being. Your mental health is an important part of your overall health if you are living with lupus or lupus nephritis.

Talk to a professional

If you want to talk to a professional if you are having difficulty coping, ask a member of your care team for a referral to a mental health professional, counselor or social worker.

These professionals are trained to help you:

• Understand and process your emotions
• Develop 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 professionals in your area. It is normal to have stress, anxiety and depression when living with chronic conditions. Learn how to manage your mental health.