How to manage my lupus nephritis?

Question

Hello doctor,

I was diagnosed with lupus nephritis last year after having swelling in my legs and foamy urine. Things were stable for a while with CellCept (Mycophenolate mofetil, anti-organ rejection drug) and Prednisone (Prednisolone, a steroid), but lately my symptoms have been getting worse — more swelling, fatigue, and joint pain. My last labs showed increased protein in my urine and higher creatinine. I am scared my kidneys might be getting damaged even with treatment. What does this mean for the long term? Should we be changing the medications or doing a biopsy again? Is there anything more I can do to help my kidneys besides what I’m already taking?

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

I read your query and can understand your concern.

I am truly sorry to hear that your symptoms are worsening—lupus nephritis can be unpredictable and emotionally taxing, even when you have been following treatment closely.

The return of swelling, increased fatigue, joint pain, and especially the rise in proteinuria and creatinine levels may indicate that your lupus nephritis is becoming more active again or that your current treatment is no longer adequately controlling the inflammation in your kidneys.

From a medical standpoint, this does raise concern about ongoing or renewed kidney damage, and it warrants a prompt reassessment. Here is what typically needs to be considered:

Repeat kidney biopsy: In some cases, especially if there’s a significant change in kidney function, your doctor may recommend another biopsy to evaluate whether the type or severity of lupus nephritis has changed. This helps guide the next steps in treatment.
Medication adjustment: If Mycophenolate mofetil (anti-organ rejection medicine) and Prednisolone (a type of steroid) is no longer effective enough; other treatments such as Rituximab (a monoclonal antibody), Belimumab (a monoclonal antibody used for lupus treatment), or even switching to Cyclophosphamide (a chemotherapy drug) might be considered, depending on your biopsy results and lab trends.
Supportive care: In addition to immunosuppressants, make sure your blood pressure is tightly controlled and that your cholesterol levels are monitored and treated if elevated, as these also impact kidney outcomes.
Lifestyle support: A low-sodium, kidney-friendly diet, proper hydration, and avoiding over-the-counter nonsteroidal anti-inflammatory drugs (like Ibuprofen) can also help minimize further damage. Work closely with both your rheumatologist and nephrologist—this collaboration is critical.

Unfortunately, lupus nephritis can recur or flare even during treatment, but early recognition and timely adjustment of therapy can preserve kidney function and prevent progression to more serious stages.

Please do not delay in discussing these recent changes with your care team. You are doing the right thing by staying vigilant.

I hope this information helps you.

Feel free to ask further queries.

Thank you.