Diagnosed With IgAN or C3G? Here’s What To Expect

Finding out you have a kidney disease like IgA nephropathy (IgAN) or complement 3 glomerulopathy (C3G) raises questions — some of them scary.

What’s my IgAN or C3G prognosis? Is everything about my life going to change? Will I have to go on dialysis or get a kidney transplant?

Nephrologist Ali Mehdi, MD, addresses common misconceptions about life with IgAN or C3G, and shares what to expect moving forward.

Understanding your IgAN or C3G diagnosis

While IgAN and C3G are different diseases, they impact your kidneys in a similar way and cause similar symptoms. That’s because they’re both glomerular diseases — meaning they affect the part of your kidneys that filter waste and remove extra fluids (glomeruli).

IgAN is the most common glomerular disease. C3G is rare.

Both IgAN and C3G can be inherited, meaning you’re born with a predisposition to the disease. They can also be acquired later in life. Either way, if these conditions aren’t treated, they’ll cause kidney damage and, eventually, end-stage renal disease (also known as end-stage kidney disease or ESKD).

So, how quickly do IgAN and C3G progress? The (unsatisfying) answer is: It depends. They can present in a variety of ways, causing different symptoms and complications from person to person.

“We can never know for sure how things will end up,” Dr. Mehdi acknowledges. “But looking at your kidney biopsy can give us hints about how aggressive your condition is and whether it will respond to treatment.”

Diagnosis isn’t destiny

The single biggest misconception about having IgAN or C3G is that the diagnosis means you’re in kidney failure.

“Learning you have a kidney disease can be pretty scary, so people go online and start reading about kidney failure,” Dr. Mehdi says. “But these diagnoses mean you have kidney disease. They don’t mean you have kidney failure.”

Kidney failure is the fifth and final stage of kidney disease. It’s when you start dialysis. Living with IgAN or C3G puts you at risk of developing kidney failure — but it’s not inevitable.

“Sometimes, people with these kidney diseases have had family members with the same condition end up on dialysis,” he shares. “But just because someone else ends up on dialysis doesn’t mean you will, too.”

Your nephrologist may be able to stabilize your condition so that it never progresses that far. Even if they can’t stabilize you, it could take years for your kidney function to decline to stage five. It depends on how aggressive your condition is.

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

Lifestyle changes

Another common misconception about living with IgAN or C3G is that you’ll have to make radical lifestyle changes. The truth? You probably will have to make some adjustments. But what they are — and how much they’ll change your day-to-day routine — depends on how your condition progresses.

“IgAN and C3G can look vastly different from person to person, and the same is true of treatment plans,” Dr. Mehdi says. Still, there are some basic principles to keep in mind.

“In general, we encourage weight loss, getting plenty of aerobic exercise and living a healthy lifestyle,” he adds. It’s also common to:

• Limit your sodium intake.
• Reduce the amount of animal protein you eat.
• Avoid supplements unless your provider specifically recommends them.

Not all lifestyle changes will be right for every person living with IgAN or C3G. Let’s look at the renal diet as an example. This highly restrictive diet is all about limiting your intake of phosphorus, potassium and other substances that stress your kidneys. But it’s not the right choice for everybody who’s living with IgAN or C3G.

“Only a fraction of patients who have end-stage kidney disease and need dialysis might need a renal diet,” Dr. Mehdi clarifies. That’s because kidney disease can cause various complications, including high blood pressure — and as it turns out, potassium is very good for helping regulate blood pressure.

All this is to say: The lifestyle changes your doctor suggests will reflect your whole-body health, not just your renal health. And because there isn’t a cure for IgAN or C3G, the most important thing to do is try and manage your condition — and its associated symptoms — without causing more damage.

“Your nephrologist will make recommendations tailored to your situation,” Dr. Mehdi says.

Monitoring your condition

Because of all the unknowns associated with IgAN and C3G, it’s important to monitor your symptoms carefully for signs that the disease is progressing. You’ll do that by:

• Meeting with your nephrologist every three months
• Maintaining a symptom tracker to keep tabs on your overall health
• Getting regular blood tests to measure your creatinine levels
• Having your urine tested for blood (hematuria) and protein (proteinuria)
• Checking your blood pressure regularly and, in some cases, doing at-home urine tests to keep an eye on your kidney function.

IgAN and C3G can be unpredictable. If complications arise, your nephrologist will adapt your treatment plan with different medications and lifestyle recommendations.

“Even when you aren’t receiving treatment for your kidney disease, your nephrologist will work with you to address other elements of your health that could cause complications,” Dr. Mehdi notes. “This includes managing your blood pressure and, if needed, prescribing medications to prevent further kidney damage.”

By staying vigilant, managing chronic conditions and keeping in touch with your healthcare team, you can work with your provider to slow the progression of IgAN and C3G.

“Your condition might change over time, and sometimes, it changes quickly,” says Dr. Mehdi. “That’s why I can’t emphasize enough the importance of building a relationship with a nephrologist you trust.”