How steroid-reduction affects the body

If you’re in the process of lowering your steroid dose in partnership with your doctor, you’re probably aware that steroids must be tapered (reduced slowly) and not stopped abruptly. If steroids are stopped too fast, patients can develop troublesome effects of “adrenal insufficiency,” a condition in which the body struggles to make enough of certain important hormones.

After all of the challenges you may have experienced on your journey with steroids, from the early onset of sleep problems, weight gain, mood changes, moon face, and body fat redistribution, adrenal insufficiency can feel like yet another hurdle you need to get over. By knowing what to expect and working with your doctor, you can make great strides forward and eventually overcome adrenal insufficiency. 

Why does this happen?

It may be surprising to learn that the human body makes its own glucocorticoids. They’re produced by the adrenal glands in the form of the hormone cortisol. Cortisol is essential for a wide variety of normal bodily functions. 

On average, humans produce enough cortisol per day to be approximately equivalent to eight milligrams a day of prednisone. 

This natural hormone production is a fine balance that’s tightly managed by a system of “feedback loops” that allow it to respond to changes. When the body has enough cortisol, it reduces production for a while. When taking steroids for inflammation, the adrenal glands sense that the body already has plenty of steroids onboard and reduce their own cortisol production. It can take days, weeks or even months for the adrenal glands to return to normal cortisol production levels once steroid treatment is reduced or stopped. It’s in this gap, when the body isn’t making quite enough of its own cortisol, that patients can experience the symptoms of adrenal insufficiency.

What to look out for

As you taper off (reduce) your steroids and your dosage falls below the amount that your body senses is needed for everyday tasks, you may notice the start of adrenal insufficiency symptoms. These symptoms often lead to considerable confusion and worry because they can mimic those of the underlying condition you were using steroids for in the first place. Symptoms of adrenal insufficiency include: 

  • Fatigue
  • Morning stiffness
  • Muscle or joint pain
  • Difficulty raising your arms above your head

Sorting out which symptoms are due to adrenal insufficiency and which might be evidence of the return of the original inflammatory condition can be challenging for physicians and patients alike. 

The key to avoiding adrenal insufficiency is a slow and careful steroid taper.

 

Top tips for avoiding adrenal insufficiency

According to John Stone, MD MPH, a Professor at Harvard Medical School and Rheumatologist at Massachusetts General Hospital in Boston, a slow and careful steroid taper is the key to avoiding adrenal insufficiency. 

This gradual reduction allows the adrenal glands to gradually resume normal cortisol production. As patients approach lower doses of prednisone, the adrenal glands should be ramping up their own cortisol output to match the reduction. However, this balance is delicate and can require multiple adjustments. 

If symptoms of adrenal insufficiency emerge during the prednisone taper, the usual approach is for the clinician to bump up the steroid dose just a little bit (perhaps only 3-4 more mg/day - enough to control the symptoms) and then to resume an even slower taper once adrenal insufficiency symptoms have resolved. 

Dr Stone’s top tips for managing adrenal insufficiency:

Taper slowly

You’ll need to work closely with your doctor to taper your steroid dosage slowly. This helps your adrenal glands gradually resume their normal function.

Monitor symptoms 

It’s very important to keep track of any new or returning symptoms and discuss them with your doctor. This can help them tell the difference between those symptoms caused by adrenal insufficiency and those caused by your underlying condition.

Discuss your dosage with your doctor

If you think you may be experiencing symptoms of adrenal insufficiency, talk to your doctor. They may recommend that you increase your prednisone dose slightly before continuing a slower taper. This helps reduce your symptoms while allowing your adrenal glands to recover.

Consult an endocrinologist (hormone specialist): 

Adrenal insufficiency is extremely complex so it can be helpful to consult an endocrinologist. They can help determine if symptoms are due to adrenal insufficiency or an underlying condition.

Dr Stone says: “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.” 

The bottom line

Steroids are highly effective for managing inflammation and autoimmune diseases, but they can suppress the body's natural production of the hormone cortisol, leading to adrenal insufficiency. By tapering steroids slowly, monitoring symptoms closely, and maintaining open communication with your healthcare provider, you can effectively manage these risks. 

Remember, always consult your doctor before making any changes to your medication or lifestyle to ensure the best care for your specific health needs.