To keep side effects to a minimum, the first step in corticosteroid use is to take the lowest dose possible that is effective for you. Although very high doses are given, often intravenously for severe lupus-related kidney inflammation and other acute flares, maintenance doses are typically10 milligrams (mg) per day or lower – sometimes even as low as 2 or 3 mg per day. Dosages are determined by body weight. If your disease is under control, ask your doctor if lowering your steroid dose is an option.

Whenever corticosteroids are lowered or discontinued, they must be tapered slowly to avoid withdrawal symptoms, such as a drop in blood pressure, headache, increased joint or muscle pain, fatigue, fever or nausea. People who are on corticosteroids long term must be extra cautious. When synthetic corticosteroids are given, the body’s adrenal gland reduces the production of natural cortisol. If the synthetic supply is stopped abruptly, your body won’t have enough cortisol to compensate and will go into adrenal crisis – a medical emergency similar to shock. Signs include sweating, chills, lightheadedness and weakness or loss of consciousness.

Insomnia is a common problem. If you have difficulty sleeping, ask your doctor if you can try taking a once-daily dose in the morning. Avoiding caffeine throughout the day helps, too.

High doses of steroids may also also bring on changes in heartbeat. 

Osteoporosis is one of the most serious side effects of long-term use. Corticosteroids decrease the amount of calcium the body absorbs and increase the amount it excretes, making bones brittle and weak. Your doctor likely will schedule regular bone-density tests and have you take calcium and vitamin D supplements daily. You also may need to add a bone-preserving bisphosphonate, such as alendronate (Fosamax) or risedronate (Actonel).

Some studies have shown that alternate-day dosing – taking a dose every 48 hours, instead of every 24 – maintains benefits while decreasing some of the serious side effects associated with long-term use. 

The Benefits of Corticosteroids

These drugs come with well-known side effects, but newly discovered benefits are balancing their reputation.

“Steroid treatment is common in rheumatoid arthritis, but its benefits and risks still are being debated,” says Eva Baecklund, MD, PhD, a researcher with the department of rheumatology at Uppsala University Hospital in Sweden. “Many patients are hesitant to use corticosteroids because they are afraid of the side effects.” 

As a result, doctors and patients instead have embraced traditional disease-modifying antirheumatic drugs and newer biologics, but two new studies could help swing the pendulum back toward corticosteroids.

Steroids are no more toxic, and may be less so, than other drugs used to treat RA. And they do modify disease, slowing progression (as seen on X-ray) by as much as 50 percent in some studies, says Maarten Boers, MD, PhD, a professor of clinical epidemiology in the department of clinical epidemiology and biostatistics at the VU University Medical Center in Amsterdam, the Netherlands.

Controlling disease activity may have benefits in addition to slowing progression. “Increased disease activity is a risk factor for lymphoma,” Dr. Baecklund says. In the study she led, corticosteroids protected against large B-cell lymphoma, the type most associated with RA.

“These findings alone do not ‘sway’ the discussion,” says Dr. Boers. “However, we’re slowly changing the perception of [corticosteroids] back to a more realistic point of view. They are still some of the most powerful and essential drugs in use today, with side effects that need to be managed.”