Find out what to expect—and what you can do—before and after diagnosis.
People with lupus are at high risk for developing lupus nephritis. This makes routine testing vital to uncovering problems that can lead to more serious outcomes, such as kidney failure or cardiovascular complications.
Urine tests are the most frequent tests you'll receive. They're vital to detect any problems with the way your kidneys are functioning. Your physician will collect a urine sample and check for levels of protein (also referred to as proteinuria) and blood (hematuria) in the urine. Your protein levels should stay below 0.5 grams per day.
It's recommended that people living with lupus get a urine test every 3 months, while those with active lupus nephritis are tested as often as monthly.
Blood tests measure creatinine, a waste product that results from the normal breakdown of muscles. The amount of creatinine in your blood is used to estimate your glomerular filtration rate (eGFR), which is used to determine how well the kidneys are filtering blood.
A kidney biopsy confirms the diagnosis and determines how much of the kidney is affected. Usually performed as an outpatient procedure in a hospital, a nephrologist or rheumatologist will use the results to categorize the stage of lupus nephritis and help determine treatment options.
You may hear your doctor talk about your estimated glomerular filtration rate (eGFR). But what does that mean? Your eGFR is used to see how well your kidneys are filtering blood. Your eGFR is determined by the results of your blood creatinine test, age, and gender.
Your eGFR number represents how much kidney function you have—the lower the number, the less your kidneys are functioning as they normally should. If your eGFR number is 60 or below, talk to your doctor about treatment options.
Diagnosed with lupus nephritis in 2011
"To anyone recently diagnosed — or on the verge of a diagnosis — I'd tell them this is a journey. There is a community here for you, and we're ready to help you along the way."
Being diagnosed with lupus nephritis can feel overwhelming, confusing, or even isolating. But you don't have to face it alone—the ALL IN community is here to help you every step of the way.
Join the ALL IN community on social mediaControl inflammation and help preserve kidney health
Reduce treatment-related side effects
Prevent flare-ups
Immunosuppressants: Used to treat aggressive or more severe lupus nephritis. These are powerful therapies that keep your immune system from damaging your kidneys.
Steroids: Used to quickly reduce and control inflammation of the kidneys.
Blood pressure medications: Used to lower blood pressure and may also slow the progression of kidney disease.
Antimalarials: Often used to treat lupus and has also been shown to be beneficial in the treatment of lupus nephritis.
People living with lupus nephritis often need to visit different healthcare providers for different needs. You may work with more specialists than the ones listed below, but these are some of the most common ones you'll interact with when managing lupus nephritis.
Specialist who treats many diseases, including those of the joints and muscles, and may diagnose and treat lupus and lupus nephritis.
Specialist who treats many diseases, including those of the kidney, and may diagnose and treat lupus nephritis. Often, the Nephrologist is the doctor who confirms the diagnosis of lupus nephritis through a kidney biopsy.
Doctor you see for regular checkups.
Doctor who provides emotional support and helps you cope with lupus and lupus nephritis.
A licensed nutrition expert who offers guidance and advice on dietary changes and meal planning based on your specific needs.
When living with lupus nephritis, it's critical to meet with your doctor often to help prevent further disease progression and long-term complications. One of the best ways to feel in control of your care is by keeping track of things like appointments, symptoms, lab results, and medications. Be sure to attend all your doctor appointments and get your labs done in advance so your doctor has up-to-date results. If you can't see your doctor in person, you can arrange a telehealth appointment.
Ensure you have a reliable internet connection
Use the chat feature within the telehealth platform
Complete any requested lab work prior to appointment to discuss with doctor
Ask your doctor about checking your vitals ahead of time (temperature, pulse rate, and blood pressure)
Keep an eye out for a text message or email from your doctor that includes a link to your session
This discussion guide includes suggested questions and
topics to review with your healthcare provider.
