Congenital Adrenal Hyperplasia (CAH): How to Manage Side Effects From Steroid Treatment

Congenital Adrenal Hyperplasia (CAH): 6 Steroid Side Effects and How to Manage Them

Congenital Adrenal Hyperplasia (CAH): 6 Steroid Side Effects and How to Manage Them
Everyday Health

Steroids like glucocorticoids may be the cornerstone of your treatment when you have congenital adrenal hyperplasia (CAH). In classical CAH, steroids replace the cortisol and aldosterone your body can’t make enough of, preventing adrenal crisis and suppressing adrenal androgens to enable normal growth and development.

If you have classical CAH, your medical team will prioritize optimizing your steroid dosage: The lowest possible dose that still adequately suppresses androgens will help minimize the long-term complications of glucocorticoid therapy. Other options include the use of shorter-acting glucocorticoids like hydrocortisone instead of prednisone or dexamethasone, oral contraceptives to restore cycles and help with hyperandrogenism, and newer therapies like crinecerfont (Crenessity), a CRF1 receptor antagonist that suppresses androgen production, helping to lower glucocorticoid doses.

Not everyone with the condition needs to use glucocorticoids, especially women with nonclassical CAH (NCCAH).

 But if your use of glucocorticoids is still impacting your quality of life, even after collaborating with your medical team to safely optimize your doses, certain lifestyle shifts may be able to reduce the unwelcome effects of these vital drugs. Here are six common issues that you might be experiencing, why they happen, and what you can do about them.

Increased Appetite and Weight Gain

Steroids can ramp up signaling to your hypothalamus, the part of your brain that’s responsible for hunger.

“They also increase the activity of the food-reward pathway,” says Prathyusha Pagadala, MD, an endocrinologist with the University of Kansas Health System in Kansas City, Kansas. That means that steroids make your meals and snacks even more pleasurable.
As a result, you might find yourself having the urge to eat bigger meals or snack more, which can lead to weight gain, an effect that can take hold even in the earliest months of life.

Feel Fuller by Pairing Protein and Fiber at Each Meal

Some foods and ingredients are naturally more satisfying than others. Choosing more filling foods can make it easier to manage your hunger and keep your weight in check.

 Dr. Pagadala encourages her CAH patients to pair protein-rich foods with fiber-rich ones; the combo slows the rate at which food is digested to keep you satisfied for longer. Try grilled chicken breast with veggies over brown rice, Greek yogurt with berries and chopped nuts, or black bean soup with a whole grain roll and fruit.
Consider eating bigger breakfasts, medium-size lunches, and smaller dinners, too. Research shows that those who get more of their calories early in the day have better appetite control.

Greater Fracture Risk

Up to 40 percent of patients who take steroids long-term develop bone loss that can increase the likelihood of fractures.

 That’s because the meds inhibit the activity of osteoblasts, the cells responsible for building new bone and helping existing bone tissue grow and repair itself.

“Preventing bone loss becomes of utmost importance for individuals with CAH,” says Victoria Finn, MD, an endocrinologist with Medical Offices of Manhattan in New York City.

Improve Your Bone Health With Weight-Bearing Exercises

Get into the habit of doing physical activities that put a little bit of stress on your bones, which can actually help make them stronger, Dr. Finn recommends. Resistance training, brisk walking or jogging, and sports like tennis or pickleball are all great choices.

Check with your doctor before starting a new exercise program. If you’re already at a high risk for fractures, you may need to avoid certain exercises that involve bending forward (like partial sit-ups or seated forward bends), since they can increase the risk of spinal fractures.

Insomnia

A good night’s rest can be harder to come by when you’re on steroids for CAH. That’s because steroids interfere with your body’s natural sleep pathways, making it more difficult to sleep and increasing the number of nightly wakings.

Cortisol, a hormone that naturally peaks early in the morning and dips at night, can be disrupted when steroid levels are excessively high in the evening,” Finn says.

Adjust Your Dose Timing to Improve Sleep

If you can avoid taking steroids in the evening, it can make a big difference for your sleep. “It’s advisable to administer the highest steroid dose early in the day and refrain from taking it after 4 or 5 p.m.,” Finn says. Work with your endocrinologist to do this safely and effectively, and don’t make changes to your dosing or schedule on your own.

Fragile Skin

If you notice that your skin seems to bruise more easily and take longer to bounce back from wounds, or if you seem to get stretch marks without a clear cause (like rapid weight gain or growth), you’re not alone. These are common problems among long-term steroid users, including people with CAH, Finn says. The reason: glucocorticoids suppress the immune system, which impairs the skin-healing process and makes blood vessels more fragile.

Protect Your Skin

Here’s an instance where prevention may be the best medicine. Taking extra care to protect your skin from trauma and excess sunlight, which can also be damaging, can help you avoid bruising, redness, stretch marks, and other issues in the first place, Pagadala says. Being vigilant about using moisturizer and sunscreen can help too, adds Finn.

Of course, accidents sometimes happen. If you do get a big bruise or you sustain another skin wound, let your doctor know. They can determine if the injury should be treated with additional medications to help your skin heal faster.

GI Symptoms and Ulcers

Nausea, vomiting, and indigestion are common steroid side effects.

The issue stems from the fact that steroids can irritate the lining of the stomach, especially when your stomach is empty, Finn says. Over time, this repeated irritation can actually damage the lining of the stomach, raising the risk for more serious problems like gastric ulcers and bleeding.

Take Your Meds With Food

Whenever possible, try to take your steroid medications with meals. Doing so can go a long way toward keeping stomach irritation at bay.

It might also be wise to limit your use of NSAID pain relievers (like aspirin and ibuprofen), too. NSAIDs can irritate the lining of your stomach, and when you’re on steroids, they can up your risk of adverse GI events by as much as fourfold.

Swelling and Puffiness

Steroids can cause your body to hang onto extra water, which can make you look swollen and puffy.

 Some people notice their face starts to look bigger and rounder (sometimes called “moon face”), which is caused partly by fluid retention and partly by the fact that steroids can cause fat to be redistributed to the face and upper body, Finn says. Swelling can also happen in your legs and midsection.

Watch Your Salt and Stay Hydrated

This sort of swelling generally isn’t harmful, but you might not like the way it looks. But there are some ways to control puffiness. Try to limit your salt intake and drink plenty of fluids. Both habits discourage your body from holding onto extra water, which can reduce swelling, Finn says. And while it can sometimes be easier said than done when you’re on steroids, try to get enough sleep. Falling short on shut-eye causes inflammation, which can be a recipe for facial puffiness.

The Takeaway

  • Steroids are an important part of congenital adrenal hyperplasia (CAH) treatment for many people, and safely minimizing your reliance on them is one of the most important goals of CAH treatment.
  • If you’re still experiencing steroid side effects after optimizing your drug treatment with your medical team, you may be able to reduce their impact by following a few commonsense habits.
  • When you’re working with your medical team to adjust your doses, be sure to ask about dose timing and how to use food to prevent gastrointestinal side effects.
  • Healthy lifestyle habits — like protecting your skin, exercising, and eating plenty of fiber — can help you maintain your weight and keep your bones and skin healthy.

Resources We Trust

EDITORIAL SOURCES
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Anna-L-Goldman-bio

Anna L. Goldman, MD

Medical Reviewer

Anna L. Goldman, MD, is a board-certified endocrinologist. She teaches first year medical students at Harvard Medical School and practices general endocrinology in Boston.

Dr. Goldm...

Marygrace Taylor

Marygrace Taylor

Author

Marygrace Taylor is an award-winning freelance health and wellness writer with more than 15 years of experience covering topics including women’s health, nutrition, chronic conditi...