Life With IgAN or C3G

Our bodies and their systems of cells, tissues and organs are so complex that when a problem affects one small cog in our proverbial biological wheel, it can leave a lasting impression on the way we feel and how we live our lives.

That certainly feels like the case when we talk about kidney diseases like IgA nephropathy and C3G. But how concerned should you be about your diagnosis? Do you really have to change everything about your diet or how often you exercise? And is kidney dialysis an inevitable outcome for everyone?

Nephrologist Ali Mehdi, MD, breaks down what you can expect after receiving a diagnosis for kidney diseases like IgAN and C3G and what lifestyle changes you may need to make to prolong the health of your kidneys.

What are IgAN and C3G?

IgA nephropathy (immunoglobulin A nephropathy) and C3G (complement 3 glomerulopathy) are both kidney diseases. More specifically, they fall under the category of glomerular diseases which affect a specific filtering component in your kidneys. IgA nephropathy and C3G have distinct differences and quite a few similarities.

IgA nephropathy, or IgAN, is the most common glomerular disease and causes symptoms like:

• Blood in your urine (hematuria).
• Foamy urine with too much protein (proteinuria).
• Pain in the sides of your back.
• Ankle swelling (edema).
• High blood pressure (hypertension).

C3G is rare and comes with a lot of the same symptoms as IgA nephropathy. In some cases, someone with C3G can develop symptoms that affect the light-sensitive tissue at the back of their eye as well.

Both IgA nephropathy and C3G can be genetically inherited (born with it) or acquired later in life. If left untreated, they can both lead to kidney damage and end-stage renal disease (also known as end-stage kidney disease or ESKD) over time. And both IgA nephropathy and C3G have different presentations — like IgA vasculitis — that can be either aggressive and fast-growing or slow-growing in the way they develop.

“Whenever we have a disease that has different presentations, we don’t necessarily know how the disease will behave from one person to the next,” says Dr. Mehdi. “We can never really tell how things will really end up, but when we look at your kidney biopsy, we can see hints on how potentially aggressive it is and, hopefully, whether it will respond to treatment.”

Common misconceptions about IgA nephropathy and C3G

Having a condition that affects your kidneys isn’t the same as having a failing kidney.

“Whenever someone gets a diagnosis of a kidney disease, people are pretty scared and they’ll go on different social media platforms and start reading about kidney failure,” says Dr. Mehdi. “Having these diagnoses carry implications that you have kidney disease, but that doesn’t mean you have kidney failure.”

Kidney failure is the fifth and final stage of kidney disease. You can live with IgA nephropathy and C3G for years before it ever gets to that point — and, in some cases, doctors are able to stabilize these diseases so they never progress to full kidney failure.

“Our goal is to work together to try and avoid kidney failure,” states Dr. Mehdi. “As soon as you have these diagnoses, it’s key to follow your symptoms closely with your nephrologist, someone who really understands the condition and can guide you on what to expect.”

Kidney diseases can often affect other systems and organs in your body, including your heart and blood pressure. Because of this, there’s the common misconception that having a kidney disease means you have to start using the renal diet, which puts restrictions on phosphorous and potassium. But Dr. Mehdi says this isn’t always a necessary change for everyone who develops a kidney disease.

“Potassium is very good for you and it has cardiovascular effects,” says Dr. Mehdi. “Only a fraction of patients who have end-stage kidney disease and need dialysis might need a renal diet.”

Because IgA nephropathy and C3G are so vastly different in the way they develop and present their symptoms, Dr. Mehdi explains that each person’s treatment plan will look different depending on the recommendations from your nephrologist.

In many cases, you can expect your treatment plan to include a number of lifestyle changes that, for one, take the burden off your kidneys fighting the disease, and two, improve the overall symptoms you’re experiencing. These lifestyle changes can include:

• Limiting sodium intake.
• Limiting animal protein.
• Eating foods low in saturated fat and cholesterol.
• Avoiding supplements not FDA-approved.
• Increasing your physical activity and exercise.

“Controlling your blood pressure is absolutely key, but the expectations for your treatment plan can be different for every person who’s diagnosed,” reiterates Dr. Mehdi. “In general, we encourage weight loss, aerobic exercises and a healthy lifestyle.”

Do people with IgA nephropathy and C3G always end up on dialysis?

Not everyone who’s diagnosed with IgA nephropathy or C3G will have to have dialysis. Dialysis is a treatment for people whose kidneys are failing. This treatment is used if IgA nephropathy or C3G have left your kidneys damaged beyond repair and you’ve developed ESKD (end-stage kidney disease).

“Sometimes, people with these kidney diseases have had family members who have also had the disease and they might have seen their uncle or cousin end up on dialysis. But just because your family member ends up on dialysis doesn’t mean you will also end up on dialysis,” clarifies Dr. Mehdi. “We work as much as possible to mitigate any risk of your kidney disease progressing to try to prevent dialysis and prevent kidney failure.”

How do you know if your kidney disease is progressing?

Of course, not all kidney diseases function the same way. Some forms of these kidney diseases can be more aggressive than others. Developing ESKD may happen quickly in some cases, but in others, it may take years. And some people may never develop ESKD at all.

There isn’t a cure for IgA nephrology or C3G, so the most important thing to do is try and manage your condition and its associated symptoms without causing more damage to your kidneys than what’s already been done.

As part of your treatment plan, doctors can monitor the progress of your condition, continue to treat additional symptoms like high blood pressure and anemia, and pivot to different treatment options should your condition evolve or change over time.

Genetic testing can help doctors determine targeted treatment plans that could benefit you and other loved ones who may inherit the kidney disease.

And clinical trials are also available for those interested in treatment options that are still under development.

“Some people might not have any progressive disease. But even when we do nothing, we’re not really doing nothing,” stresses Dr. Mehdi. “Your nephrologist will work with you on other elements that could cause complications, like controlling your blood pressure, and offer medications to prevent further kidney damage.”

Because of all the unknowns associated with IgA nephropathy and C3G, it’s important to monitor your symptoms and meet with your nephrologist every three months.

Blood tests can help determine if you experience an increase in creatinine (a waste product that comes from normal wear and tear on muscles). Urine tests can help determine if there’s an increase in blood or protein in your urine. If these tests show any increase, it could be a sign you’re experiencing more inflammation in your kidney and that your kidney disease is progressing.

As things change, your nephrologist may adapt your treatment plan with different medications and treatments that target complications caused by these kidney diseases. But because things can change so suddenly, and often without warning, Dr. Mehdi emphasizes that you should expect to monitor your symptoms, hold appointments in three-month intervals, and even consider using prescribed at-home test kits to help keep an eye on the health of your kidneys. By staying vigilant, making lifestyle changes and staying in touch with your healthcare team, you can work together to slow the progression of IgA nephropathy and C3G.

“Even if I recommend no treatment, at some point, things might change over time, and sometimes, they change quickly,” says Dr. Mehdi. “Because of this, I can’t emphasize enough the importance of building a relationship with a nephrologist you trust.”