Lupus and Adrenal Insufficiency

Many people with lupus need corticosteroids such as prednisone or methylprednisolone to control inflammation and prevent organ damage. These medicines can be life changing. However, long-term steroid use can also lead to adrenal insufficiency, a common but often overlooked complication. As The Lupus Encyclopedia explains, “Anyone on steroids (such as prednisone and methylprednisolone) should understand adrenal insufficiency. It is a common and underrecognized problem.”

---

NOTE: Johns Hopkins University Press, publisher of The Lupus Encyclopedia, is a nonprofit publisher. If you purchase JHUP books, like The Lupus Encyclopedia, you support projects like Project MUSE.

---

Understanding the connection between lupus and adrenal insufficiency can help us recognize warning signs early and prevent serious complications. By working closely with our rheumatologist and following safe steroid practices, we can greatly reduce our risks.

What Is Adrenal Insufficiency?

The adrenal glands sit on top of the kidneys and produce dozens of hormones that help regulate many vital body functions. These hormones control blood pressure, blood sugar, salt balance, metabolism, and the body’s response to stress.

The Lupus Encyclopedia explains:

“The adrenal glands… produce about 50 different steroid hormones with numerous functions… this includes maintaining blood pressure, handling salts by the kidneys, responding to stress, and handling nutrients such as glucose, fats, and proteins.”

The adrenal glands also produce hormones such as DHEA and epinephrine, which play essential roles in maintaining normal body function.

Adrenal insufficiency develops when these glands stop producing enough natural steroid hormones, particularly cortisol. According to The Lupus Encyclopedia:

“Adrenal insufficiency occurs when the adrenal glands stop making enough of some of these hormones, especially steroids.”

How Steroids Cause Adrenal Insufficiency

The Hypothalamic-Pituitary-Adrenal Axis

Our bodies carefully regulate cortisol production through what doctors call the hypothalamic-pituitary-adrenal (HPA) axis.

As described in The Lupus Encyclopedia, the hypothalamus releases corticotropin-releasing hormone (CRH), which signals the pituitary gland to produce ACTH. ACTH then tells the adrenal glands to make cortisol.

Normally, the body produces only a small amount of cortisol each day.

“The body typically makes the equivalent of 5 mg to 7 mg of prednisone daily.”

During illness, surgery, or other stressful situations, healthy adrenal glands automatically increase cortisol production.

Why Long-Term Steroids Suppress the Adrenal Glands

Prednisone and methylprednisolone act like cortisol. When we take these medications regularly, the brain believes enough steroid hormone is already present.

The Lupus Encyclopedia explains:

“When someone takes steroids… the hypothalamus senses this increase in cortisol-like steroids.”

As a result, CRH and ACTH production falls, and the adrenal glands become less active.

The book explains this process clearly:

“The adrenal glands respond to this lower amount of ACTH the way that a muscle responds to lack of exercise.”

Eventually they shrink.

The higher the steroid dose and the longer treatment continues, the greater the risk that adrenal function becomes suppressed.

When Adrenal Insufficiency Becomes Dangerous

Many people have no symptoms while taking higher doses of steroids because the medication replaces the missing cortisol.

Problems occur when the body suddenly needs more cortisol or when steroids are reduced too quickly.

The Lupus Encyclopedia states:

“The problem is not realized until either a person becomes stressed while taking relatively small doses of steroids… or the steroid drug is decreased too quickly… or is stopped abruptly.”

Stress Can Trigger an Adrenal Crisis

During infections, injuries, or surgery, healthy adrenal glands dramatically increase cortisol production.

However, suppressed adrenal glands cannot respond appropriately.

The book explains:

“The adrenal glands can produce the equivalent of about 20 to 100 mg of prednisone a day during stress.”

If the glands have become suppressed, they simply cannot meet this increased demand.

The result may include profound fatigue, dizziness, severe body aches, weakness, and dangerously low blood pressure.

Common Symptoms of Adrenal Insufficiency

Symptoms often develop gradually, making them easy to mistake for lupus itself.

According to The Lupus Encyclopedia, common symptoms include:

• Fatigue
• Weakness
• Loss of appetite
• Nausea
• Stomach pain
• Weight loss
• Body aches
• Lightheadedness
• Depression
• Confusion
• Longer recovery from infections

These symptoms become especially concerning during steroid tapering.

Steroid Withdrawal Versus Lupus Flare

Reducing prednisone can be challenging because adrenal insufficiency symptoms often resemble lupus symptoms.

The Lupus Encyclopedia explains:

“Steroid withdrawal symptoms… are the same as adrenal insufficiency symptoms.”

Doctors must determine whether symptoms represent active lupus or an adrenal gland that has not yet recovered.

This distinction is one reason steroid tapering should always be supervised by an experienced physician.

Who Has the Highest Risk?

The book identifies several situations where adrenal insufficiency becomes especially likely.

Higher-risk patients include those who have:

• Taken 20 mg or more of prednisone daily for at least three weeks
• Taken evening steroid doses for several weeks
• Developed Cushingoid side effects from steroid therapy

However, the author also reminds us that adrenal suppression varies greatly between individuals.

Some patients develop adrenal insufficiency even after lower steroid doses taken over several months.

How to Reduce the Risk

Take Steroids Correctly

One of the simplest ways to reduce adrenal suppression is timing.

The Lupus Encyclopedia advises:

“It is essential to take steroids… in the morning, right after awakening, rather than at nighttime.”

Morning dosing better matches the body’s normal hormone rhythm.

Never Stop Steroids Suddenly

Stopping prednisone abruptly can be dangerous.

Instead, doctors gradually taper steroids to allow the adrenal glands time to recover.

The book explains:

“People should never suddenly stop steroids on their own.”

Recovery may take weeks, months, or even longer depending on how long steroids were used.

Stress Dosing During Illness

Patients with adrenal insufficiency often require temporary increases in steroid doses during illness.

These are called stress doses.

The Lupus Encyclopedia explains:

“This temporary increase in steroid dose is called a ‘stress dose.'”

The book emphasizes that anyone who develops a fever, infection, trauma, or needs surgery should contact their rheumatologist immediately.

The sick-day rules recommend temporarily increasing steroid doses during illnesses and seeking emergency care if vomiting prevents oral medication or severe illness develops.

Emergency Preparedness

Patients diagnosed with adrenal insufficiency should discuss emergency planning with their physician.

The book recommends keeping injectable steroids available for emergencies when appropriate.

It also advises considering a medical alert bracelet.

According to The Lupus Encyclopedia:

“If you are in one of the groups… consider wearing a medical alert bracelet.”

This simple step can help emergency healthcare professionals recognize the need for immediate steroid treatment.

Working With Your Rheumatologist

Managing lupus and adrenal insufficiency requires careful communication.

If symptoms appear during steroid tapering, notify your physician promptly.

The author notes that many patients recognize when tapering has progressed too quickly and temporarily return to the previous effective dose while awaiting medical advice.

Every patient’s recovery is different, so taper schedules must be individualized.

Key Points to Remember

The Lupus Encyclopedia summarizes several essential lessons that every steroid user should understand. Adrenal insufficiency occurs because prolonged steroid therapy causes the adrenal glands to shrink and stop producing enough natural cortisol. Steroids should usually be taken first thing in the morning unless your physician instructs otherwise. Never stop prednisone suddenly or taper it faster than recommended. During infections, surgery, or major injuries, extra “stress doses” of steroids may be needed. If fatigue, weakness, dizziness, or other adrenal insufficiency symptoms develop during a steroid taper, contact your rheumatologist immediately. Finally, patients at high risk should discuss emergency injectable steroids and medical alert identification with their healthcare team.

By understanding adrenal insufficiency before problems occur, we can use corticosteroids safely while continuing to benefit from one of the most effective treatments available for controlling lupus inflammation.

For more in-depth information on Lupus and Adrenal Insufficiency:

Read more in The Lupus Encyclopedia, edition 2

Look up your symptoms, conditions, and medications in the Index of The Lupus Encyclopedia

If you enjoy the information from The Lupus Encyclopedia, please click the “SUPPORT” button at the top of the page to learn how you can help. 

---

What are your comments and opinions?

If you have lupus, what has your experience been? What do you recommend for other patients?

Do you have any questions to ask Dr. Thomas?

Please click on “Leave a Comment” above to comment.

Please support “The Lupus Encyclopedia” blog post page

Click on “SUPPORT” at the top of the page to learn how you can support “The Lupus Encyclopedia“

This article includes contributions from