Find out how to manage rare kidney diseases such as C3G and primary IC-MPGN, with practical guidance and real-life insights from people living with kidney diseases.
How are C3G and primary IC-MPGN diagnosed?
People showing signs and symptoms of kidney dysfunction may be asked to go through a range of diagnostic procedures:1
This may feel like a lot of tests, but they are essential for getting a clear and accurate diagnosis. Some patients may experience anxiety about kidney biopsy, which is a common response to invasive diagnostic procedures, but it is the only reliable way to confirm C3G or primary IC-MPGN.2 Having this clarity ensures you receive the right care and a treatment plan tailored to your needs.
Medical history and physical examination to assess symptoms, family history, and underlying conditions.
Urine and blood tests to test for proteinuria and haematuria.
Kidney biopsy to assess structural changes in the kidney and complement or immune complex deposits.
Genetic and complement tests to identify abnormalities in the complement system that can contribute to kidney damage.
For primary IC-MPGN, additional tests are conducted to rule out secondary causes and underlying conditions.
Are C3G and primary IC-MPGN progressive?
Yes, both C3G and primary IC-MPGN are chronic progressive diseases and, if left untreated, may result in irreversible damage. The good news is that early diagnosis allows for timely treatment, which can allow for a timely and individualised care plan to be put in place.3
Up to ~50% of people with C3G and primary IC-MPGN experience kidney failure within 10 years of diagnosis. This requires dialysis or kidney transplantation.1
What self-management steps can I take?
Here are some suggestions to help you to feel more in control of your condition:4
1
Speak to your healthcare provider about any dietary adjustments you can make and what physical activity might activity might be best for you.
2
Take care of your emotional well-being by talking to family or friends. You can also contact your local patient organisation. If you feel you need more emotional support or want to learn new coping skills, explore your options for speaking to a trained counsellor or a patient support group.
3
Schedule regular follow-ups with your nephrologist, ensuring you discuss any new signs, symptoms or concerns you might have. That’s what they are there for!
Managing my kidney disease
1 Bomback, A.S., Charu, V., and Fakhouri, F. (2025) Challenges in the Diagnosis and Management of Immune Complex-Mediated Membranoproliferative Glomerulonephritis and Complement 3 Glomerulopathy. Kidney International Reports, 10(1), pp. 17-28.
2 Hogan J.J., Mocanu M., Berns J.S. (2016). The Native Kidney Biopsy: Update and Evidence for Best Practice. Clin J Am Soc Nephrol.;11(2):354-362. doi:10.2215/CJN.07480715.
3 Caravaca-Fontán, F., Toledo-Rojas, R., Huerta, A. et al. (2025). Comparative analysis of proteinuria and longitudinal outcomes in immune complex membranoproliferative glomerulonephritis and C3 glomerulopathy. Kidney International Reports. In press: www.sciencedirect.com/science/article/pii/S246802492500049X
4 RKNet - C3G and IC-MPGN (2025). Available at: www.erknet.org/patients/yourkidneydisease/c3g-ic-mpgn/disease-information