1 Patry, C., Webb, N. J. A., Feißt, M., et al. (2024). Kidney Transplantation in Children and Adolescents With C3 Glomerulopathy or Immune Complex Membranoproliferative Glomerulonephritis: A Real-World Study Within the CERTAIN Research Network. Pediatric Nephrology, 39(12), 3569–3580.
2 Latropoulos, P., Noris, M., Mele, C., et al. (2016). Complement gene variants determine the risk of immunoglobulin-associated MPGN and C3 glomerulopathy and predict long-term renal outcome. Molecular Immunology, 71, 131–142.
3 Bomback, A. S., Santoriello, D., Avasare, R. S., et al. (2018). C3 glomerulonephritis and dense deposit disease share a similar disease course in a large United States cohort of patients with C3 glomerulopathy. Kidney International, 93(4), 977–985.
4 National Kidney Foundation. (2025). Immune Complex Membranoproliferative Glomerulonephritis (IC- MPGN). Retrieved from https://www.kidney.org/kidney-topics/immune-complex-membranoproliferative-glomerulonephritis-ic mpgn
5 Noris, M., & Remuzzi, G. (2024). C3G and Ig-MPGN—treatment standard. Nephrology, Dialysis,Transplantation, 39(2), 202–214.
6 Dąbrowska-Bender, M., Dykowska, G., Żuk, W., Milewska, M., & Staniszewska, A. (2018). The impact on quality of life of dialysis patients with renal insufficiency. Patient Preference and Adherence, 12, 577–583.
Understanding the Kidney Care Journey
If you or a loved one has been diagnosed with Complement 3 Glomerulopathy (C3G) or primary Immune Complex Mediated Membranoproliferative Glomerulonephritis (IC-MPGN), it’s natural to wonder what the future might look like. Many people living with rare kidney conditions may have questions about long-term kidney health and how their condition might change over time.
Everyone’s journey with C3G or primary IC-MPGN is unique. Understanding how they develop and working closely with your healthcare team can help you feel more prepared and supported in the steps ahead.
How C3G and Primary IC-MPGN Can Progress
The way these conditions progress varies considerably from person to person. Some people live for many years with stable kidney function, while others may see more changes over time. Research suggests that around 40-50% of people with C3G, may eventually experience significant loss of kidney function1. However, individual outcomes can vary widely.
Your personal experience depends on many factors, including genetics2, how active the disease is and what your early tests show3. This is why your healthcare team is best placed to help you understand what’s most relevant to you and what to expect over time.
Recognising Changes Along the Way
Understanding your body and noticing changes early can help you and your healthcare team
respond quickly. Some signs to pay attention to include4:
- Increased protein in your urine (proteinuria): Your urine may appear foamy or frothy
- Blood in your urine (haematuria): This may make your urine look pink, red, or tea-coloured, although sometimes it can only be detected by a laboratory test
- Changes in how often you urinate: You may notice that you need to pass urine more or less frequently than usual
- Swelling (oedema): You may develop new or worsening swelling, especially in your legs, ankles, feet, or around your eyes
- Rising blood pressure: Your blood pressure may increase or become harder to manage
- Changes in appetite: You may lose your appetite or feel nauseous
- Changes in how you feel: You may experience greater tiredness or find it harder to focus
If you notice anything new or concerning, it’s important to speak with your healthcare team.
Early adjustments to your care plan may help protect your kidney function for longer.
Managing C3G and Primary IC-MPGN
Although there is currently no cure for C3G or primary IC-MPGN, there are several approaches that may help slow progression and support kidney health. Your care plan will be tailored to you, but often include a combination of monitoring, medication, and lifestyle support.
Regular Monitoring
Regular check-ins allow your healthcare team to track how your kidneys are working. This may include blood and urine tests, blood pressure checks, and monitoring complement levels in your blood5. Staying engaged with routine monitoring and keeping up appointments helps your team to identify patterns early and supports timely decision-making.
Kidney-Friendly Lifestyle Choices
Small, sustainable choices can make a difference in supporting your kidney health:
- Diet: Your healthcare team may suggest reducing salt, adjusting protein or managing foods high in phosphorus or potassium7. A registered dietitian who specialises in kidney disease can help you build a plan that not only supports your health, but that feels realistic and enjoyable8
- Blood pressure: Maintaining a health blood pressure helps protect your kidneys. This can include reducing salt intake, maintaining a healthy weight, and managing stress
- Movement: Regular, gentle exercise suited to your abilities can help you maintain a healthy weight, control blood pressure, and support your overall wellbeing
Working Together with Your Healthcare Team
Your healthcare team is there to support you throughout your journey. Open conversations, asking questions, and sharing how you’re feeling can help shape care decisions that align with your needs and goals over time.
When Kidney Function Declines
For some people, kidney function may decline despite careful management. If this happens, your healthcare team will talk with you about next steps and available options.
Dialysis is one form of kidney replacement therapy that can support the body when the kidneys are no longer able to do their job effectively. While starting dialysis can feel like a major change, many people find that, with time, it becomes part of a new routine. Dialysis can help manage symptoms, maintain balance in the body, and allow people to continue with many aspects of daily life around their dialysis appointments6.
Your care team will support you in understanding the different types of dialysis, what they involve, and how they may fit into your life. Importantly, reaching this stage does not mean the end of living well, instead it marks another phase of the kidney care journey.
Finding Support and Community
Living with a rare kidney disease can sometimes feel isolating, but support is available. Patient organisations, advocacy groups, and kidney communities offer education, shared experiences, and reassurance that you are not alone:
- CompCure: A resource dedicated to complement disorders
- NephCure: Patient stories, advocacy and education
- World Kidney Day: Global kidney health awareness and educational tools
- Local kidney organisations: Many countries have national kidney foundations or charities that offer support groups and educational materials
Living with C3G or primary IC-MPGN is a journey with challenges, adjustments, and resilience. With the right support, strong partnerships with healthcare professionals, and growing awareness, many people continue to lead full, meaningful, and connected lives.
A Journey with Many Possible Paths
It’s understandable to think ahead, but there is no single path for everyone living with C3G or primary IC-MPGN. Many people maintain stable kidney function for years, while others adapt to changes over time with the right care and support.
Each journey is individual. Staying connected with your healthcare team, keeping up with monitoring, and accessing reliable information can help you feel supported at every stage.