Many people with congenital adrenal hyperplasia (CAH) need lifelong medication. CAH affects how the adrenal glands make hormones such as cortisol, aldosterone, and androgens. Treatments for CAH help control symptoms and prevent complications, but they can also cause side effects.

Side effects can also vary depending on the medication, dose, timing, and treatment duration. Some symptoms may come from poorly controlled CAH rather than treatment. Keeping a record of symptoms and discussing patterns with an endocrinologist can make it easier to identify the cause.

People with classic CAH usually need glucocorticoids, such as hydrocortisone, to replace cortisol. Some also need fludrocortisone, a mineralocorticoid.

Glucocorticoids such as hydrocortisone, prednisone, and dexamethasone can increase appetite and change how the body stores fat. This can lead to weight gain. Many glucocorticoid side effects are more likely when the dose is higher than the body needs.

Weight changes may happen gradually. A healthcare provider may review your medication schedule, other medications, eating patterns, activity level, and possible metabolic conditions before recommending changes.

If you or your child gains weight quickly while taking a medication like hydrocortisone, talk with your endocrinologist. Don’t change the dose without medical guidance.

Long-term glucocorticoid treatment may slow bone growth. CAH can also affect height. Adrenal androgens may cause rapid growth early in life but may also cause the growth plates to close early. This can lead to a shorter adult height.

Children with CAH should have their height and growth rate tracked over time. Healthcare providers may also look at bone age and hormone levels.

The goal of treatment is to control excess adrenal androgen production without giving so much glucocorticoid medicine that it affects healthy growth and development.

Mood swings, irritability, and other emotional changes can occur with glucocorticoids, particularly at higher doses. Steroids influence the brain’s balance of neurotransmitters (chemical messengers), leading to changes in mood.

Some people also notice changes in sleep, energy, concentration, or behavior. Children may appear unusually restless or have difficulty settling down. These side effects can be difficult to manage, especially for younger people who may not understand why they feel this way.

Tell your healthcare provider if mood or behavior changes become severe or hard to manage.

Having too much glucocorticoid for a long time can lower bone mineral density. It can slow the building of new bones and affect the body’s calcium balance.

Bone density scans, called DXA scans, can help reveal early signs of bone loss. The Endocrine Society recommends checking bone density in adults with CAH who have used high doses of glucocorticoids for a long time. Testing is also recommended for those who have had a nontraumatic fracture.

Here are some ways you can support your bone health:

Ask your healthcare provider what’s appropriate before starting supplements or a new exercise program.

Fludrocortisone can cause high blood pressure if the dose is too high. It can increase sodium and water retention by the kidneys, which can lead to increased blood volume. This can raise blood pressure.

Although high blood pressure usually doesn’t cause symptoms, signs of fluid retention or other effects of too much fludrocortisone can include:

People taking mineralocorticoids like fludrocortisone should have their blood pressure checked regularly.

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. This may include:

These changes are more likely with overtreatment. You might not experience them with appropriately dosed CAH treatment. Talk with your endocrinologist if you notice any physical changes.

Insulin resistance, which can raise the risk of type 2 diabetes, is another potential side effect of long-term glucocorticoid use. Glucocorticoids can make your body less responsive to insulin, the hormone that regulates blood glucose (blood sugar) levels, and cause the liver to produce more glucose.

High blood sugar may not cause noticeable symptoms at first, but symptoms can include:

People with a family history of diabetes or other metabolic risk factors may need closer monitoring. Your healthcare provider may monitor your blood sugar as part of ongoing CAH care.

Glucocorticoids can suppress the immune system, making it harder for the body to fight off infections. They may also slow wound healing. Minor cuts, scrapes, and wounds may take longer to heal.

If you have signs of an infection like persistent fever, worsening pain or discoloration around a wound, or shortness of breath, contact your healthcare provider.

Don’t skip glucocorticoid doses without asking your doctor, because the body may need additional cortisol during physical stress.

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

Gastrointestinal problems, such as stomach pain, nausea, and ulcers, are potential side effects of glucocorticoids. Higher doses, especially when combined with nonsteroidal anti-inflammatory drugs (NSAIDs) such as ibuprofen or naproxen, may increase the risk of ulcers or gastrointestinal bleeding.

Taking medications with food may reduce mild stomach upset for some people, but follow your prescription instructions.

Ask your healthcare provider before regularly taking an NSAID. Seek medical care for vomiting blood or black, tarry stools.

Communicate With Your Healthcare 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 healthcare team can adjust dosages, recommend safe alternative treatments, or provide additional support to help you manage both CAH and treatment side effects.

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.