Has your doctor recently talked to you about using corticosteroids to help treat immunoglobulin A nephropathy (also called IgA nephropathy, IgAN, or Berger’s disease)? If you’re newly diagnosed or haven’t used steroids to treat IgAN before, this may raise questions.

While you should always talk about your treatment plan with your nephrology (kidney care) team, it’s also important to learn about treatments yourself. This can give you time to fully understand the pros and cons of a treatment option. It can also help you come up with questions to ask your healthcare provider the next time you meet with them.

Understanding How Steroids Are Used To Treat IgAN

In IgAN, immune system proteins (antibodies) called immunoglobulin A clump together and end up in the kidneys. These clumps are called immune complexes. Over time, this buildup causes inflammation and even scarring in the tiny filters in your kidneys called glomeruli. This means IgAN is a type of glomerulonephritis, which can cause kidney damage. You may find that you end up with proteinuria (protein in your urine) and hematuria (blood in your urine) because your kidneys aren’t able to do their job well. IgAN is usually diagnosed by a kidney biopsy.

IgAN is considered a chronic kidney disease that often gets worse over time. You and your nephrologist will work together to try to slow down the progression of the disease. Your doctor may do this in a lot of ways, including by prescribing steroids.

Steroids work by suppressing the immune system, which lowers the amount of inflammation in your body. They may help your body to produce less immunoglobulin A and prevent the clumping. The idea behind this treatment is that if your glomeruli aren’t as inflamed, they won’t be damaged as quickly.

There are different options when it comes to using steroids for IgA nephropathy. Your doctor might give you large doses of steroids periodically (called pulses), followed by much lower doses that you take all the time. In some studies, this was effective, though some people did relapse after the pulse ended.

Another large study showed that even steady lower-dose steroids help slow the progression of IgAN. It’s important to note that the doses in this study were significant, even though they were lower than options tested before.

More recently, there seems to be another viable option. Researchers have found a way to give people a steroid in such a way that it specifically targets the inflammation that can lead to IgAN. Scientists weren’t sure if this treatment worked, but a new phase 3 study showed it helps many people for a short time. More studies are needed to see if it keeps working and is safe over time. It’s important to note that this option may not be available everywhere, and that it's more expensive than other steroid options.

Different people will respond to steroids differently. They may be very effective for one person while not being effective at all for someone else. Different people will have different side effects, too.

Together with a healthcare professional, you should consider the benefits and drawbacks of each option. Your doctor can give you medical advice based on the specifics of your body and how IgAN is progressing. This information can help you make an informed decision about your treatment options.

Monitoring Your Response to Steroids

Your doctor will want to monitor your kidney function and how you’re responding to any medications, including steroids, regularly. The exact timetable will depend on you and how IgAN is progressing in your body. Most of the time, they’ll use blood tests and urine tests to look for protein and blood in your urine and to measure your glomerular filtration rate (GFR) and blood urea nitrogen (BUN) levels, among other things.

At your follow-up appointments, all of these numbers will give your doctor a good overall picture of how well your kidneys are functioning. They can help your doctor determine if steroids are working for you or if you need additional treatments or a different treatment. They can also give you information you need to decide if continuing steroids is worth the hassle of managing any side effects you experience from them.

Common Side Effects of Steroids

Using steroids for any reason can come with significant side effects, so you’ll need to balance the benefits they offer you with the drawbacks you experience. These are some of the most common side effects people have when they take steroid medications.

Weight Gain

Weight gain — particularly in the face, abdomen, and the back of the neck — is common when people take steroids.People can gain weight while taking steroids because they change the chemical balance in the body. This includes changes to how your body balances water and electrolytes and how it stores fat, carbohydrates, sugars, and protein.

All of this can mean that your body holds on to fluids, that you want to eat more, and that your body stores more fat in unusual places. The more steroids you take and the longer you take them, the more likely you are to experience weight gain.

Increased Infections

Because steroids suppress your immune system, your body might not be able to fight off infections as easily. These may be mild or moderate, but some can become severe and even life-threatening. You and your doctor will need to work together to have a plan for what to do if you get an infection while on steroids.

Higher Blood Pressure

Corticosteroid therapy can also cause hypertension (high blood pressure). Since high blood pressure is also common with IgAN and worsen the condition, this side effect could be a significant problem for people with that diagnosis. Like with weight gain, higher blood pressure happens because of changes to the way the body balances water and electrolytes (like salt).

Changes to Your Mood and Thinking

Taking steroids can affect your mood and thinking. Some people notice mood swings, irritability, anxiety, trouble sleeping, or feeling unusually energized. Steroids may also affect memory and concentration, and rarely can cause confusion or delirium. This may happen because steroids influence stress hormones and brain chemicals involved in mood and mental clarity.

Mild changes may improve as your dose is lowered. If symptoms are severe (such as agitation, deep depression, or confusion), contact your care team right away. Your dose or treatment may need to change.

Bone Thinning

Some people who take steroids develop weaker bones, which can raise the risk of breaks and, in some cases, osteoporosis. Steroids can interfere with calcium balance and speed up bone loss. Your care team may suggest steps to protect your bones, such as calcium and vitamin D, lifestyle changes, or medications that help prevent bone loss. Because every treatment has trade-offs, talk with your clinician about your personal fracture risk and how to reduce it.

Raised Blood Sugar

Consistent steroid usage over time can raise your blood glucose (blood sugar) levels, which can lead to diabetes or make diabetes worse if you already live with that diagnosis. They make your body less sensitive to insulin and change the way you produce, absorb, and use insulin. Since diabetes can cause additional glomerular damage, this is a side effect to take seriously and be on the lookout for if you already live with a glomerular disease like IgAN.

Other Treatment Options for IgAN

If your body doesn’t respond to steroid therapy or you have too many side effects for them to be of overall benefit, there are other options for the treatment of IgA nephropathy. Your doctor may also choose to prescribe some of these alongside steroids, too.

Your nephrologist may choose to treat conditions that come alongside IgAN, like high blood pressure or high cholesterol. Statins are commonly used to lower cholesterol levels and angiotensin-converting enzyme (ACE) inhibitors or angiotensin-receptor blockers (ARBs) are common for blood pressure. ACE inhibitors and ARBs also help reduce protein loss in the urine.

Lifestyle changes like modifying your diet or quitting smoking may be recommended as well. Your doctor can give you more specifics on those. In addition, new medications are being developed that your doctor might want to try, too.

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If you’ve been prescribed steroids for IgA nephropathy, what was your experience like? Let others know in the comments below.