Yes, if you have lupus nephritis in all but the rarest of cases, you also have, by definition, lupus.
But, way too many patients don’t know that simple and critical fact.
Lupus nephritis is a kind of kidney disease that is a complication of systemic lupus erythematosus (SLE or lupus). Lupus is a serious autoimmune disease that can damage kidneys – which is called lupus nephritis – and other organs throughout the body.
One Patient’s Journey
Take for example Christl Domina, 50, of Billings, MT who was living her life without any health problems, until suddenly one day in 2007 her blood pressure skyrocketed for no apparent reason.
“My primary care physician was at a loss and had no idea what was wrong,” Christl said. “There were a lot of tests, and one showed high creatinine, so he sent me to a nephrologist.”
Christl’s kidneys were failing but her medical team wasn’t sure why, but they did know she needed dialysis to save her life. It took years for Christl to understand that the lupus nephritis she was battling was caused by SLE.
“Lupus is a sneaky disease,” Christl said. “Lupus nephritis and lupus present in many different ways.”
Unfortunately, Christl’s story isn’t unique. A new joint study by the National Kidney Foundation and the Lupus Research Alliance of hundreds of patients revealed that half who knew they have lupus nephritis didn’t believe they also had lupus.
That stat didn’t surprise Christl or another patient, Alison Lee, 37, of New York City, even though Alison was first diagnosed with SLE, then a few years later, lupus nephritis.
“When I started experiencing kidney failure, we assumed correctly that it was due to lupus,” Alison said. “But, the symptoms of lupus nephritis mimic that of other inflammatory illnesses. My symptoms were fatigue and weakness. That could have been caused by anything. I wasn’t aware that the reason was because my kidneys were failing.”
Top Take-Aways from the Study
- Patients don’t always see things the same way as doctors and the information can be understood differently.
- Patients are often told to change their diet, rather than be given a prescription or sent to a specialist.
- Lupus nephritis is not well understood, even by patients diagnosed with it.
- Patients want to know more about their condition than what their providers are telling them.
Learn more about the joint study.
Christl’s tips for other patients:
- Ask your primary a lot of questions! So, what if it extends the visit.
- Get the information about both lupus and lupus nephritis.
- Read books about the disease and the complications.
- Always be vigilant about your health.
- You are your best advocate about your health, always.
Facts about lupus nephritis
- Kidney damage is one of the more common health problems caused by lupus. In adults who have lupus, as many as 5 out of 10 will have kidney disease. In children who have lupus, 8 of 10 will have kidney disease.
- African Americans, Hispanics/Latinos, and Asian Americans are more likely to develop lupus nephritis than Caucasians. Lupus nephritis is more common in men than in women.
- The symptoms of lupus nephritis may include foamy urine and edema—swelling that occurs when your body has too much fluid, usually in the legs, feet, or ankles, and less often in the hands or face. You may also develop high blood pressure.
- Kidney problems often start at the same time or shortly after lupus symptoms appear and can include joint pain or swelling, muscle pain, fever with no known cause, a red rash, often on the face, across the nose and cheeks, sometimes called a butterfly rash because of its shape.
Remember, it’s important to have an annual physical, talk to your doctor about your health concerns or symptoms, and be your own advocate for the best medical care.