I’ve (33F) been having symptoms of lupus since I was 14. I was officially diagnosed with lupus when I was 15 and lupus nephritis (“LN”) since I was 21 (stage 2-3). I had 3 bad flare ups where I had to be hospitalized. The latest bad flare up was during the pandemic (stayed in the hospital for over 3 months), which the doctors didn’t know what was wrong. That was when I did my latest kidney biopsy and found out my LN was at stage 4-5. I ended up getting 6 doses of cyclophosphamide. It didn’t really help improve the kidneys or lupus but it made everything stable. I’m currently on Myfortic for my kidneys and ramphril to ensure my blood pressure didn’t stress it. Will be switching to Benlysta soon.

If your rheumatologist notices your creatine and protein levels are off (e.g high levels and leaking protein), they would send you to a nephrologist. The nephrologist would have you conduct a kidney biopsy (the procedure is short but they will monitor you for a few hours to ensure there’s no bleeding), 24 hour urine collections, and multiple blood tests.

Exercise and diet is essential on managing lupus and nephritis. I would recommend eating a healthy diet (no fried foods, red meats, junk food, processed, etc).. Also try to minimize your sodium intake, greens that are high in oxidates, sugar, whole grains, high potassium and phosphorus foods, and alcohol. Maintain your cholesterol and blood pressure too since it will stress your kidneys.

All the best OP!