Living with congenital adrenal hyperplasia (CAH) means you need to manage symptoms with medications all your life. CAH is a genetic disorder that affects how adrenal glands make important hormones such as cortisol, aldosterone, and androgens. Treatments for CAH help control symptoms and prevent complications, but they can also cause side effects that affect daily life.

Understanding these side effects is essential for people diagnosed with CAH and parents of children with the condition. In this article, we’ll look at nine common side effects of CAH treatments, explain how they happen, and share tips for managing them.

1. Weight Gain

Weight gain is a well-known side effect of glucocorticoids (often called steroids), such as hydrocortisone, prednisone, and dexamethasone. These drugs are often used to replace cortisol in people with CAH who have low hormone levels. Steroids can stimulate appetite, leading you to eat more and gain unwanted weight. People taking steroids often report feeling hungrier than usual, which can make it hard to maintain a balanced diet.

For children and teenagers, it’s important to manage this side effect by choosing healthy foods and being physically active. Their health care provider can help create a diet-and-exercise plan and monitor their progress.

2. Suppressed Growth in Children

Growth suppression is a major concern for children who are taking steroids. These medications may slow down growth by affecting the body’s natural production of growth hormones and bone formation. Steroids may slow the growth of long bones, which give your body shape and support its weight. Long bones are important for adolescents to reach their full height. Long-term use of steroids can lead to a shorter adult height than their genes may have allowed them to reach.

The extent of this side effect often depends on the steroid dosage and how long treatment lasts, which can be lifelong for people with CAH. It’s important for health care providers to keep tabs on growth so that they can change the steroid dosage if needed.

3. Mood Changes and Irritability

Mood swings, irritability, and emotional instability are common when using steroid treatment. These side effects can be difficult to manage, especially for younger people who may not understand why they feel this way. Steroids influence the brain’s balance of neurotransmitters (chemical messengers), leading to changes in mood and behavior. These medications can also affect how the body responds to stress, sometimes causing exaggerated emotional reactions to everyday situations.

If your mood changes become severe, your health care provider may consider adjusting the dosage or recommend other ways to help keep your mood even. You can also try this guided meditation on self-kindness to help keep emotions steady.

4. Loss of Bone Density

Osteoporosis (reduced bone density) is a serious concern for people on long-term steroid therapy. These medications can weaken bones in two ways, raising the risk of fractures and other injuries. First, steroids interfere with how well the body absorbs calcium, a mineral that’s essential for strong bones. Second, these medications slow the production of new bone tissue, which is crucial for maintaining strong, dense bones.

Regular bone density scans (dual-energy X-ray absorptiometry, or DXA, scans) can help reveal early signs of bone loss. This helps doctors make timely changes, which may include adjusting medications or starting bone-strengthening treatments such as bisphosphonates.

5. High Blood Pressure

Mineralocorticoids such as fludrocortisone, which are also used to treat CAH, can cause hypertension (high blood pressure). Mineralocorticoids increase the amount of sodium in the kidneys, which can lead to fluid retention and increased blood volume, raising blood pressure. This side effect can sometimes go unnoticed in children.

Managing blood pressure is important to help avoid serious health complications. Over time, high blood pressure can strain the heart and blood vessels, increasing the risk of heart disease, stroke, and other cardiovascular conditions. People taking mineralocorticoids should have their blood pressure checked regularly to make sure it stays within a healthy range.

6. Changes in Appearance

Some physical changes are linked with long-term or high-dose steroid use. These medications can affect the skin, as well as how and where your body stores fat. You might notice changes including:

• A rounded, puffy face, often referred to as “moon face”
• A fatty hump between your shoulders, known as a “buffalo hump”
• Increased body fat around your abdomen and trunk
• Stretch marks (discolored stripes) on your abdomen, thighs, and arms due to thinning skin

If these symptoms become very noticeable, your health care provider may consider lowering the steroid dosage or switching to a medication with fewer cosmetic side effects.

7. Insulin Resistance and Diabetes

Insulin resistance, which can raise the risk of type 2 diabetes, is another potential side effect of long-term steroid use. Over time, taking steroids can make your body less responsive to insulin, the hormone that regulates blood glucose (blood sugar) levels. Your body then requires more of the hormone to better manage blood sugar levels. Steroids also stimulate the liver to produce more glucose, leading to higher blood sugar levels.

People on long-term steroid therapy should have their blood sugar levels monitored regularly to catch early signs of insulin resistance.

8. Increased Risk of Infections

Steroids and mineralocorticoids can suppress the immune system, making it harder for the body to fight off viruses, bacteria, and other outside invaders. People taking these medications may have a higher risk of infections such as colds, flu, and respiratory illnesses. The drugs’ side effects can also cause delayed healing. Minor cuts, scrapes, and wounds may take longer to heal, and infections may become more severe or complicated if not treated promptly.

Practicing good hygiene, staying up to date on vaccinations, and reporting any signs of infection to your health care provider promptly can help keep you healthy.

9. Gastrointestinal Issues

Gastrointestinal problems, such as stomach pain, nausea, and ulcers, are potential side effects of steroid use. Some people may have stomach cramps, pain, or discomfort, particularly if they take steroids on an empty stomach. Long-term steroid use can lead to ulcers in the stomach or intestines, which can be painful and sometimes bleed.

Taking steroids with food, using antacids or other medications to protect the stomach lining, and avoiding nonsteroidal anti-inflammatory drugs (NSAIDs) can help reduce these side effects. Ask your doctor about the best approach to try.

Communicate With Your Health Care Provider

Managing your type of CAH involves finding the right balance between controlling symptoms and minimizing side effects. Being open with your endocrinologist is key. If you notice any new or worsening side effects, or if your condition changes as you age, be sure to tell your doctor. Your health care team can adjust dosages, recommend safe alternative treatments, or provide additional support to help you manage both CAH and the drug’s side effects.

Don’t change your treatment dosage without consulting your endocrinologist first. Having too little cortisol can raise your risk of an adrenal crisis, a life-threatening complication of some forms of CAH.

Remember, each person’s experience with CAH is unique, and side effects can vary. Staying informed and engaged with your treatment plan will empower you to take an active role in managing your health.

Talk With Others Who Understand

On CAHteam, the site for people with congenital adrenal hyperplasia and their loved ones, people come together to gain a new understanding of CAH and share their stories with others who understand life with the condition.

What side effects do you experience from CAH treatments? Have you found effective ways to manage them? Share your experience in the comments below.