Estimated reading time: 5 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
Congenital adrenal hyperplasia (CAH) is a condition that changes the adrenal gland's ability to produce essential hormones like cortisol, aldosterone, and androgens. To manage this condition, people with CAH rely on lifelong steroid treatments to replace these hormones. However, while steroids are lifesaving, they can also lead to side effects that vary by dose, duration, and the person's age. Part of responsible care is understanding the short and long-term side effects of steroid treatments in people with CAH. If you are wondering what these impacts can be, PatientsLikeMe has you covered.
How Steroids Work in CAH Management
Steroids used in CAH are synthetic versions of natural hormones. These medications help mimic the function of the missing hormones. This makes sure that the body can handle stress, maintain blood pressure, and regulate growth and development. The two main types of steroids prescribed are:
- Glucocorticoids: These drugs replace cortisol and include medications like hydrocortisone and dexamethasone.
- Mineralocorticoids: Mineralocorticoids replace aldosterone and include fludrocortisone. They are often paired with salt supplements.
This steroid treatment is key to living a normal life with CAH! However, they do come with some side effects.
Short-Term Side Effects
Short-term side effects often show up soon after starting or increasing steroid doses. These can affect people of all ages but may be more noticeable in children and adolescents because of their rapid development.
Common Short-Term Effects
- Mood Changes: Irritability, anxiety, or mood swings can occur as steroids affect brain chemistry.
- Sleep Disturbances: Steroids can cause difficulty sleeping or restlessness, especially with higher doses.
- Appetite Changes: Many people experience increased appetite, leading to rapid weight gain.
- Fluid Retention: Steroids can cause swelling in the hands, feet, or face due to water retention.
- Blood Sugar Spikes: Steroids may increase blood sugar levels, particularly in individuals with a predisposition to diabetes.
Acne? CAH Symptom. Gaining weight? Side effect. It can be tough to tell apart symptoms of congenital adrenal hyperplasia (CAH) and treatment side effects of steroids apart.
Watch now: Is it a symptom or a side effect?
Your body may feel out of whack when living with CAH. Too little cortisol can make you feel tired or unwell and high androgen levels can cause early puberty, premature growth, and more. Treating CAH with high-dose steroids can cause side effects like weight gain, diabetes, and bone density issues. See why it’s important to talk to your doctor about what you’re experiencing and your treatment plan.
Questions about CAH symptoms and/or side effects from high-dose steroids? Visit: WhatTheCAH to learn more.
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Long-Term Side Effects
Long-term use of steroids, particularly at higher doses, can lead to more serious complications. These effects may vary depending on age and other health factors.
Children and Adolescents
- Growth Suppression: Steroids can slow down bone growth, causing people to be slightly shorter. This is a significant concern in children and teens, where growth is a big part of development.
- Early Puberty: High levels of androgens, coupled with steroid use, may trigger early puberty or cause irregular physical development.
- Weakened Bones: Long-term steroids can reduce bone density, increasing the risk of fractures and bone pain.
Adults
- Metabolic Issues: Steroids can lead to weight gain, high blood pressure, and elevated blood sugar. This increases the risk of metabolic syndrome and diabetes.
- Bone Loss (Osteoporosis): Adults may experience thinning bones, particularly in the spine and hips. This makes fractures more common.
Older Adults
- Increased Fracture Risk: Osteoporosis becomes more severe with age, making even minor falls potentially dangerous.
- Weakened Immune System: Steroids can suppress the immune response, making infections more frequent and severe.
- Adrenal Suppression: Long-term steroid use can suppress the adrenal glands, reducing the body’s ability to produce hormones naturally.
Managing Side Effects
Managing the side effects of steroids in CAH requires careful monitoring and communications between patients and doctors. The first step is to optimize dosing. Doctors always aim to find the lowest effective dose to minimize side effects while controlling symptoms. Regular bone density scans, calcium, and vitamin D supplementation can help prevent osteoporosis. A balanced diet and regular physical activity can reduce weight gain, improve mood, and strengthen bones. Regular monitoring of blood sugar and, if needed, diet adjustments or medications can help manage glucose levels. Regular follow-ups with endocrinologists let the doctors adjust medication as needed! This will help them balance CAH management to prevent side effects.
For people with CAH, steroid treatment is a lifeline, but it comes with challenges. The side effects of steroids can affect physical health, emotional well-being, and quality of life at every stage. Understanding the risks and benefits of steroids should help you make informed decisions about care.
Taking control of your health has never been easier with PatientsLikeMe, a platform that empowers you to manage your wellness journey proactively. By joining a community who share your experiences and insights, you gain access to invaluable support and information tailored to your unique health needs. PatientsLikeMe offers tools to track your symptoms, treatments, and outcomes, enabling you to make informed decisions and communicate better with your healthcare providers. Additionally, evaluate the effectiveness of various treatments through shared patient data, ensuring you choose the best options for your health.