Lupus is an autoimmune disease. Autoimmune diseases cause your immune system to attack your healthy cells. Lupus can affect many parts of the body. When your kidneys become affected, it is called lupus nephritis. Lupus nephritis happens when your immune system attacks your kidneys. The most severe kind of lupus nephritis is proliferative nephritis, which can cause permanent damage to your kidneys. Many experts believe the cause of lupus is a combination of genetic and environmental factors.
Meet your treatment team
Download this guide to learn more about the health care professionals on your lupus nephritis treatment team and important questions to ask at your next appointment.
- What are the symptoms of lupus nephritis?
- How will I know if I have lupus nephritis?
- Who is more likely to get lupus nephritis?
- What is the treatment for lupus nephritis?
- What doctors are part of the lupus nephritis treatment team?
- What are the complications of lupus nephritis?
- What can I do to make sure I am getting the treatment I deserve if I have lupus nephritis?
- What resources are available that can help people cope with having lupus nephritis?
- Where can I get more information about lupus nephritis?
What are the symptoms of lupus nephritis?
Talk to your health care provider about checking your kidney health if you have lupus and you notice any of the following symptoms:
- Weight gain
- Joint pain
- Joint swelling
- Muscle pain
- Unexplained fever
- Red rash on face
- 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
How will I know if I have lupus nephritis?
Only people who have lupus can have lupus nephritis. If your health care provider thinks that your lupus might be affecting your kidneys, they might order urine tests to look for blood or protein in your urine. Having blood or protein in your urine can be a sign that your kidneys are not working as well as they should. Your health care provider might also want you to have a blood test to check for the level of creatinine in your blood. Creatinine is a waste product, caused by muscle activity. Having a high level of creatinine in your blood is also a sign that there’s a problem with your kidneys.
If your blood and urine tests show that there might be a problem, your health care provider might want you to have a kidney biopsy to look for signs of lupus nephritis. A kidney biopsy is a procedure where your doctor takes a very small piece of your kidneys to look at it closely under a microscope. Your doctor checks it for signs of lupus nephritis, such as inflammation or scarring.
Your health care providers may not always know if you have lupus nephritis right away. Symptoms of lupus nephritis can also look like symptoms of other diseases. It may take up to several years for you to get the right tests or diagnosis.
Who is more likely to get lupus nephritis?
An estimated 1.5 million Americans have a type of lupus. About 1 in 2 adults with lupus will have lupus nephritis. The two main risk factors for lupus nephritis are sex and race or ethnicity.
- Although 90% of people who have lupus are female, males have a higher chance of getting lupus nephritis than females.
- Racial/ethnic minorities, such as African Americans, Hispanics, and Asian Americans, also have a higher chance of getting lupus nephritis.
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. 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.
What is the treatment for lupus nephritis?
The treatment for lupus nephritis focuses on preventing more damage to your kidneys. Finding and treating lupus nephritis early can help prevent serious damage. Lupus damages your kidneys by causing your immune system to attack them. To prevent this from happening, your health care provider might want you to take a medicine called an immunosuppressant. These types of medicines weaken your immune system so that it cannot harm your kidneys as much.
Your health care provider might also want you to take medicine to lower your blood pressure. High blood pressure is the second most common cause of kidney failure (end-stage renal disease, or ESRD). Two common types of blood pressure medicine are ACE (angiotensin converting enzyme) inhibitors and ARBs (angiotensin receptor blockers). These medicines lower the amount protein in the urine and can protect the kidneys from further damage.
Having too much fluid in your body can also raise your blood pressure and strain your heart. If your body is holding on to too much water, you may have leg or ankle swelling or trouble breathing due to the fluid in your lungs. Your health care provider might tell you to take a diuretic, also known as a water pill. This medicine can help your body get rid of some of the extra fluid it is holding on to. As a result, you may need to use the bathroom more as fluid is removed through the urine.
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 different health care professionals. Many people with lupus see a rheumatologist, a doctor who treats immune system, joints and muscles. 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.
Every person’s treatment team looks different. Some other doctors you might work with include:
- Cardiologists treat issues that affect your heart and blood vessels.
- Dermatologists treat issues that affect your hair, skin and nails. hair, skin and nails
- Gastroenterologists treat issues that affect your digestive tract and liver.
- Neurologists treat issues that affect your brain and nervous system.
- Ophthalmologists treat issues that affect your eyes and vision. They can perform eye surgery and prescribe glasses and contact lenses to correct vision problems.
- Pulmonologists treat issues that affect your lungs and other parts of your respiratory system.
- Perinatologists are maternal fetal medicine doctors who provide care for patients with high-risk pregnancies.
It is important that everyone on your treatment team has up-to-date information about your health. 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, and medicines you take. If your doctors are not all part of the same network, it may 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.
What are the complications of lupus nephritis?
Lupus nephritis can cause permanent kidney damage, which is called chronic kidney disease, or CKD. The most serious type of lupus nephritis, proliferative nephritis, can cause scars to form in the kidneys. These scars damage the kidneys and keep them from working the way they should. Chronic kidney disease that gets worse and causes the kidneys to stop working is called kidney failure or end-stage renal disease (ESRD). Between 1 and 3 out of every 10 people with lupus nephritis eventually get kidney failure/ESRD.
People with lupus nephritis also have a higher chance of getting certain types of cancer, heart problems and blood vessel problems.
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 if you have not been diagnosed, trying to figure out the cause of your symptoms can be challenging too. With so many specialists, appointments, and tests, there can be a lot of information for you and your doctors to keep up with.
Get the most out of your visits with these tips:
- Keep records of your symptoms, tests, and test results so you can share them with your doctors in detail.
- Write down questions you have for your doctor and bring the questions to your next visit.
- Carry a notepad to take notes on what your doctor tells you during your visits.
- Ask for handouts or suggestions for where you can go for more information.
- Ask your nurse to talk to your doctor on your behalf.
- If English is not your preferred language, ask for an interpreter or bring an English-speaking family member to your visits.
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. 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.
What resources are available that can help people cope with having lupus nephritis?
A lupus diagnosis can come as a shock to many people. 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 just as important as your physical health if you are living with lupus or lupus nephritis.
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:
- Do deep breathing exercises
- Write in a journal
- Engage in positive self-talk (i.e. ‘I am doing the best I can.’)
- Exercise (such as walking, yoga, resistance training)
- Spend more time outdoors in the sun
- Explore creative activities (such as painting, crafting or sewing)
- Get enough sleep
- Limit alcohol and caffeine
- Tap into your faith
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 a 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 lupus nephritis 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 lupus from people who have been living with it for longer than you
- Learning more about lupus nephritis and opportunities for patients
- Finding new ways to cope
- Feeling empowered and supported by your new community
- Making new friends
Visit the Lupus Foundation of America National Network to learn more about support groups and other community-based resources near you.
Where can I get more information about lupus nephritis?
Lupus Foundation of America: www.lupus.org
Lupus Research Alliance: www.lupusresearch.org/
The National Institute of Arthritis and Musculoskeletal and Skin Diseases: www.niams.nih.gov/health-topics/lupus
The National Institute of Diabetes and Digestive and Kidney Diseases: www.niddk.nih.gov/health-information/kidney-disease/lupus-nephritis
Us in Lupus (GSK): https://www.usinlupus.com/