C3 Glomerulopathy | Managing Your Disease | WeC3G.com
Text/HTML
image shows make healthcare provider talking to a male patient or caregiver

Everyday life for some with C3 glomerulopathy (glo-MER-u-LOP-ah-the) or C3G may be challenging. There are no approved treatments for C3G and each person’s journey is unique.

The current treatment approach is to manage symptoms and attempt to slow the progression of the disease—but you don’t have to manage it alone.

Having an active care team in place for advice and support can help.

You may already have a care team with several healthcare professionals supporting you, including primary care physicians, nephrologists (neh-FROL-ah-jists), who are physicians with specialized kidney training, nurses, nutritionists, dieticians, and counselors.

Loved ones and caregivers are also members of your care team helping to support you.

Text/HTML

Managing Wellness

Managing health and wellness is important for everyone, but it’s even more important for a patient living with a rare, chronic disease affecting the kidneys.

Here are a few important things to keep in mind:

Blood pressure cuff iconBlood pressure control

Your kidneys are part of the body’s way to control blood pressure.

Your blood pressure will be checked regularly at appointments with healthcare professionals. Optimal blood pressure control is recommended.

If it is not controlled, experts often recommend medications, including angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs).

Apple iconNutrition

Nutrition is important for normal growth in children and overall health, including a healthy weight in adults. Good nutrition focusing on foods that are kidney-friendly is even more important for people who are managing a disease that affects the kidneys.

Your care team may want you to focus on limiting certain things in your diet, like salt or protein. The amounts may vary so be sure to check with your nutritionist, dietitian, or healthcare provider to know how much salt or protein you should eat. Too much salt or protein may make it difficult for your kidneys to work well and filter fluids and other things in the blood. Kidney-friendly nutrition helps the kidneys so they don’t have to work as hard at filtering.

Blood droplet iconLipid control

Lipids are fats and fat-like substances in your body. Too many lipids in the body can cause buildup, increasing the risk for heart disease. Patients with chronic damage to the kidneys may be at increased risk for heart-related problems.

A blood test will reveal if your lipids are not controlled. Your care team may recommend that you follow a diet low in saturated fats and cholesterol or take medications to help lower your lipid levels. You can find more dietary information here.

Remember that you are at the center of your health and wellness.
Partner with your care team for advice and support.

Text/HTML

Managing Moderate or Severe Disease

image shows male healthcare provider reviewing a list with a female patient or caregiver

C3G may not get worse over time, or progress, in all patients; however, when it does progress, managing signs and symptoms may become more challenging and require more attention from both you and your healthcare team. Over time, your kidneys may have a harder time filtering fluids and waste from the body.

Your healthcare team will monitor how your kidneys are working to help track your condition over time.

 

How Your Doctor May Follow Your Disease Progression Over Time

Two key measures to monitor the health of your kidneys include estimated glomerular (glow-MER-u-lar) filtration rate or eGFR and proteinuria (PRO-tee-NEW-ree-ah).

eGFR: eGFR is a number calculated by your doctor that reflects how well your kidneys are functioning. eGFR is based on a lab test called serum creatinine (cree-AT-i-nin) as well as your age, body size, and gender and race.

Creatinine is a waste product from muscle that can be measured in your blood. It can increase in people whose kidneys are not working well.

Serum creatinine is measured by a routine blood test. Your doctor may ask you to fast prior to the test or to refrain from eating cooked meat.

Once your doctor has your serum creatinine level, he or she can use a standard calculation to determine eGFR.

eGFR gives your healthcare team the ability to track how well your kidneys are working. Lower eGFR may indicate that the kidneys are not working well.

The image shows that as C3G disease gets more severe, eGFR decreases and the protein in urine increases.

Proteinuria: Under normal circumstances, the urine should not contain protein. Proteinuria is checked by examining a urine sample to see whether protein is leaking into the urine. If there is protein in your urine, it may indicate that your kidneys are not working well. Your doctor can also follow trends in proteinuria over time.

Healthcare providers classify many diseases as mild, moderate, or severe. For C3G, moderate or severe disease reflects an increasing level of protein in the urine and creatinine in the blood.

Monitoring your eGFR and proteinuria levels can help your care team determine the progression of kidney damage over time and determine appropriate treatment options.

 

Treatment for C3G

The main goal of treatment in C3G is to slow damage to the kidney over time.

Unfortunately, there are no approved treatments for patients with the disease. Depending upon the progression of the disease, experts may recommend the use of medications called steroids and immunosuppressants to help reduce inflammation and turn down the immune system; however, information is limited on how well these medications work in C3G. It is important to discuss the risk and possible benefits of available medications and the expectations for your treatment plan with your care team.

New treatment options for those affected by C3G are needed. Clinical trials are research studies that are conducted to better understand and treat disease. Clinical trials of new investigational medicines for C3G are now underway.

Learn more about clinical trials.

Text/HTML

The Journey Over Time

Each patient's journey with C3G may be different. Some patients may experience a rapid development of the disease while others may experience a slower worsening of signs and symptoms over time. It is important to discuss your individual journey with your healthcare team.

Living with a chronic disease can also have an impact on those around you, like your family members and caregivers. Having a support system around you helps to manage the ups and downs.

Unfortunately, it is not yet clear how to determine which patients are at risk for worsening of their C3G, including rapid worsening. Visit the Tools and Resources section to learn more about ongoing research studies, including a natural history study to better understand how disease progresses or changes over time.

C3G is often associated with a decline in kidney function. Research shows that within 10 years of diagnosis, about 30% to 50% of patients will progress to a form of kidney disease called end-stage renal disease (ESRD), in which kidney function declines dramatically. In ESRD, people are no longer able to filter and remove waste from the body with their own kidneys.

show image of a pair of kidneys with header 'Within 10 years of diagnosis – about about 30% to 50% of patients will progress to end-stage renal disease

A procedure called dialysis can help patients with ESRD by using a machine to help filter blood in the body. The treatment provides some of the functions of a healthy kidney by removing waste, salt, and extra water to help keep the body in balance. Dialysis can be done at home, in a clinic, or in the hospital.

Dialysis filters blood through the body, treatment can take place at home or at a clinic or hospital

A kidney transplant may also be an option for some patients with ESRD. This requires an invasive surgery in which a new functioning kidney from a donor is implanted into the body. The new kidney restores function for the patient receiving the transplant so that the blood can be more effectively filtered.

show 2 icons of men with a kidney icon on one and an arrow pointing to the other man icon. The text reads Kidney transplant could be an option for some patients

In C3G, the function of the transplant kidney may decline over time because the underlying cause of the disease is not addressed. This is one of the reasons that new treatments for C3G are needed.

Working with your care team will be important to determine what is best for you on your C3G journey.

Text/HTML
show a family portrait of Mother in the middle and 2 daughters on either side

Learn more about the complement system, the kidney, and signs and symptoms to gain a better understanding.

Learn More
image shows 5 young male friends piling hand on hand in a symbol of working together as a team

Get the latest C3G community tools and resources.

Learn More
Text/HTML
Text/HTML