If you are tapering your steroids or have recently stopped, you may be wondering whether your body will ever feel "normal" again. The good news is that for most people, it will. But understanding what is happening inside your body during this period can make the wait feel a lot less uncertain.
What happens when you take steroids long-term
Your adrenal glands, two small organs that sit just above your kidneys, produce a hormone called cortisol every day. Cortisol helps regulate your energy, your stress response, your immune system, and much more. It is, in many ways, your body's built-in survival tool.
When you take a glucocorticoid medication like prednisone, you are taking a synthetic version of a hormone your body naturally produces called cortisol. Your body detects that cortisol levels are already high enough because of the meds you are taking and quietly tells the adrenal glands to stand down. Over weeks and months, the glands can become less active. This is known as HPA axis suppression, referring to the hypothalamic-pituitary-adrenal pathway, the communication chain between your brain and your adrenal glands. Many patients are surprised to learn this can happen at all. As one patient advocacy group put it, "long-term or repeated steroid use can shut down the body's own cortisol production, making it risky to stop suddenly or skip doses."
Signs that your adrenal glands may need more time
As your doctor tapers your steroid dose, you might notice some symptoms that suggest your adrenal glands are still catching up. These can include unusual fatigue, dizziness, nausea, muscle or joint aches, and a general feeling of being "off." These symptoms can overlap with those of your underlying condition, which is why staying in close contact with your doctor during a taper is so important.
"The typical approach to avoiding or treating adrenal insufficiency is to taper steroids slowly to allow the adrenal glands to slowly wake up after being shut down by oral steroids. This is a tricky balance to achieve, and it sometimes takes more than one attempt." Dr John Stone, Professor of Medicine, Harvard Medical School
Why we taper slowly
A slow, gradual reduction in your steroid dose gives the adrenal glands time to reactivate step by step. Clinical guidelines recommend reducing by as little as 1mg of prednisolone every two to four weeks. This cautious approach also allows your doctor to watch for signs of adrenal insufficiency and adjust the pace if needed. Never change your dose without first discussing it with your doctor.
How your doctor can check on your adrenal glands
If your doctor wants to assess how well your adrenal glands are recovering, they may recommend an ACTH stimulation test, sometimes called a short synacthen test. It involves a small injection of a synthetic hormone, followed by blood tests to measure how well your adrenal glands respond. A normal result is a reassuring sign that recovery is on track.
Stress dosing: when your body needs extra support
During a taper or shortly after stopping steroids, your adrenal glands may not yet produce enough cortisol to meet the extra demands of physical stress, such as surgery, a serious infection, or a significant injury. In these situations, your doctor may recommend a temporary increase in your steroid dose, known as stress dosing. This is a safety precaution, not a setback. Make sure your medical team always knows you are on, or have recently been on, steroids.
When to see an endocrinologist
Most people's adrenal glands recover within six to twelve months of stopping steroids, though the timeline varies. If your HPA axis has not recovered after a year of being on a physiological dose, or if you have experienced an adrenal crisis, your doctor may refer you to an endocrinologist, a specialist in hormones, for further assessment and support.
The bottom line
Your adrenal glands are resilient, and for the great majority of people, they do bounce back. A slow, supported taper is the single most important thing you can do to protect them during this time. Keep your doctor informed about any new symptoms as you reduce your dose, and never stop steroids abruptly.
Remember, always consult your doctor before making any changes to your medication or lifestyle to ensure the best care for your specific health needs.
To read more from Dr John Stone on navigating the taper, including his tips for managing adrenal insufficiency symptoms, read our full article here.