Newly diagnosed with lupus nephritis. What was your experience?
Hi everyone,
My wife (29F) was diagnosed with lupus about a month ago, and we're still trying to process everything and understand what our future might look like.
Her blood tests (I think it was anti-dsDNA and other lupus-related antibodies) led to the diagnosis of SLE. After that, the doctors checked her heart, lungs, brain, kidneys, and other organs. Fortunately, everything else looked normal, but they found kidney involvement.
They first noticed it because of protein in her urine. She then did a 24-hour urine collection. The total urine volume was around 3.5 liters, and the test showed 1,298 mg of protein in 24 hours.
Her nephrologist said this confirms kidney involvement, but they need to perform a kidney biopsy to determine exactly how severe the damage is and what class of lupus nephritis she has.
Has anyone here had a similar experience? If so:
What was your 24-hour urine protein level when you were diagnosed?
What did your biopsy end up showing?
How are you doing now?
We live in Turkey, and she has already started treatment:
Mofacept (mycophenolate mofetil, equivalent to CellCept): 2,000 mg/day (500 mg × 2 tablets, twice daily)
Prednol (methylprednisolone): 48 mg/day
Plaquenil (hydroxychloroquine): twice daily
Her doctor told us she has lupus nephritis of moderate severity, but we don't yet know the biopsy class.
One thing we're struggling with is understanding how much this will affect our daily lives. For example, is it still realistic to enjoy summer vacations? Her doctor strongly advised her to avoid sun exposure, and we're wondering how others with lupus manage things like beach holidays, traveling, and spending time outdoors.
We're not looking for medical advice or to replace her doctors—we're just hoping to hear from people who've been through something similar. Any experiences or tips would mean a lot.
Thank you. ❤️