What to expect with C3G or primary IC-MPGN
You are not alone
Living with C3G or primary IC-MPGN can feel overwhelming at times.
There may be questions, challenges, and moments of uncertainty along the way. Here, you’ll find stories, tools, and support to help you feel more informed and more confident moving forward.
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See how Chase and his mom navigated his childhood with C3G
See how Chase and his mom navigated his childhood with C3G
See Mary’s resilience through kidney transplants with C3G
See Lindsey’s journey to C3G diagnosis and her family history of kidney disease
Need guidance on talking about C3G or primary IC-MPGN?
Living with C3G or primary IC-MPGN can look different for everyone
Some people experience symptoms that disrupt daily life, while others may feel very little. It’s important to remember that even when the disease is quiet, kidney damage may still be happening. That’s why paying attention to changes in your body—and staying connected to your care team—can make a meaningful difference.
Fatigue—A persistent feeling of tiredness that doesn’t go away with rest
Protein in the urine (proteinuria)—This can appear as foamy or bubbly urine and may indicate kidney issues
High blood pressure—Commonly associated with kidney problems and can worsen kidney damage over time
Yellow deposits in the eyes (drusen)—
Swelling (edema)—Typically in areas like the hands, feet, or ankles, due to fluid retention
Blood in the urine (hematuria)—Often visible as a reddish or brownish tint, it can signal inflammation in the kidneys
High cholesterol—A condition where there is an excessive amount of cholesterol—a waxy, fat-like substance—in the blood
These symptoms may not always appear together, and they vary in severity from person to person.
Noticing symptoms? Tracking them can help you and your doctor
Knowing what to watch for is only part of the journey
Living with C3G or primary IC-MPGN often means ongoing monitoring, conversations with your care team, and exploring ways to help manage the disease over time.
Some management approaches are limited in the aspects of C3G and primary IC-MPGN they are able to address:
- Some medications and dietary changes help manage symptoms of C3G and primary IC-MPGN. These include steroids, blood pressure medications, and reducing sodium in your diet
- Complement inhibitors are another type of medicine used to treat these diseases. They work by blocking key proteins in the complement system
- Eating well can be an important part of managing kidney health. Your doctor or care team may recommend dietary changes in addition to treatment, based on your specific needs
- Knowing this information can help you ask the right questions at your next appointment
When these diseases are not adequately managed, they can lead to ongoing kidney inflammation and damage. This can cause kidney function to worsen over time, and potentially result in the need for dialysis and/or a kidney transplant.
Staying proactive and connected with your care team can help you better understand what’s happening and what next steps to take
A kidney transplant can restore function but is not a cure
For those living with advanced C3G or primary IC-MPGN, dialysis may become necessary when the kidneys can no longer effectively function. While dialysis can help manage kidney failure, it’s often a temporary measure, with many eventually considering a kidney transplant as the next step.
People who receive a kidney transplant are often prescribed multiple, daily medications that are required to:
- Prevent transplant rejection
- Continue to manage symptoms of C3G or primary IC-MPGN
However, almost 9 in 10 people with C3G see their disease return after a kidney transplant because the underlying cause—complement overactivation—remains.
- The complement system can stay overactivated and continue to create a buildup of C3 fragments, causing injury in the transplanted kidney
Life after transplant presents its own challenges with frequent monitoring and maintenance of the transplanted kidney
Living with a rare disease can take its toll
C3G or primary IC-MPGN don’t just impact your physical health, but your mental and emotional health as well. The stress of managing symptoms, navigating uncertainty, or waiting for answers can feel overwhelming at times.
Connecting with others, practicing mindfulness, and talking to a mental health professional can help you feel more supported and in control while living with C3G or primary IC-MPGN.
The impact of C3G and primary IC-MPGN goes beyond physical symptoms
Patients
Fatigue and other symptoms from C3G or primary IC-MPGN can cause missed work or school, frequent medical appointments, and missing out on social activities.
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Caregivers
Supporting those with C3G or primary IC-MPGN can take an emotional and social toll, requiring time for appointments and care coordination.
Connecting with people who understand what you’re going through can make a meaningful difference. Explore community events >
