Steroid Tapering, Health Benefits, & Lupus

The best daily steroid dose for lupus can change. Strategic dosing is an important part of managing lupus. A new study shows that successful steroid tapering of prednisone has increased since 2000.

During a lupus flare, you want to feel better. But, the strategies that work to get symptoms under control are often very different than what is necessary for the day-to-day management of lupus.

Lupus treatment plans include doctor-prescribed medications like non-steroidal anti-inflammatory drugs (NSAIDs), antimalarials, immunosuppressants, and steroids. Of these, steroids can be particularly challenging to manage because they offer long-term risks, like organ damage, despite providing short-term relief from symptoms. We will explore steroids, the risks and challenges associated with the medications, and tips for tapering.

What Are Steroids?

The term “steroid” is used to describe medications having a particular molecular configuration. This core structure is composed of 17 carbon atoms fused into four rings. There are many different types of steroids including:

• Corticosteroids
  • Glucocorticoids
• Sex steroids
  • Estrogen
  • Progesterone
  • Testosterone
• Secosteroids
  • Vitamin D
• Neurosteroids
  • Dehydroepiandrosterone (DHEA)

People with lupus often take corticosteroids. These medications help regulate the function of the immune system and decrease inflammation throughout the body. Common corticosteroids are:

• Cortisone
• Prednisone
• Prednisolone
• Hydrocortisone
• Methylprednisolone (Medrol)
• Dexamethesaone (Decadron)
• Triamcinolone IM

Corticosteroids can be taken in four different ways:

1. Orally
   • Tablets, capsules, syrups
2. Topically
   • Creams and ointments
3. Via Injection
4. Inhaled
   • Inhaler or intranasal spray

Common Steroid Side Effects

Steroids cause many side effects. Because of this, you should work with your lupus treatment team to adjust dosing to minimize the impact on your health. Often this means trying to take steroids for short periods of time only. Side effects can vary by the method of ingestion, but common side effects include:

• Weight gain
• Acne
• Infection
• Irritability
• Difficulty sleeping
• Elevated pressure in the eyes
• Fluid retention and/or swelling in the legs
• High blood pressure
• Problems with memory or mood

Additionally, long term use of steroids can lead to more serious medical conditions like osteoporosis, cataracts, glaucoma, or muscle weakness. To learn more about potential side effects, check out the Johns Hopkins Lupus Center.

What is Steroid Tapering?

Steroid tapering is the process of slowly decreasing the amount of steroid taken. For people with lupus, this process can take a few months. However, longer tapers may be necessary for prolonged steroid treatment (more than 1 year taking steroids).

According to a 1998 study published in American Family Physician, a stepped reduction is the recommended tapering schedule. Every 3 to 7 days, reduce the steroid dosage. Depending on the medication, the reduction amount and success threshold can vary. Be sure to develop a plan with your lupus treatment team.

The purpose of steroid tapering is to help your body adjust. Corticosteroids mimic the effects of hormones that your body naturally produces in your adrenal glands, like cortisol. However, when you are taking the medication, your body begins to decrease the natural production of hormones.

Suddenly stopping a steroid can trigger withdrawal symptoms including:

• fatigue
• muscle aches
• weakness
• nausea
• loss of appetite

New Research: Weaning Off Glucocorticoids

148 people with lupus participated in a 2019 study that was designed to test the value of removing glucocorticoids from the lupus treatment plan

91 participants (61.5%) stopped taking glucocorticoids with the assistance of a doctor. When the medication was removed, less than half of these patients were in complete (48.9%) or clinical (39.6%) remission. The researchers tracked the participants’ progress over the course of 6 years.

People with lupus who stopped glucocorticoids experienced significantly lower disease activity, and over half (54.2%) were able to achieve complete remission. Despite noting the the withdrawal of the medication was possible, some people still experienced lupus flares. The researchers stressed that the withdrawal of glucocorticoids should only be attempted after long-term remission.

Researchers and clinicians are exploring new treatment plan strategies. You can read more about lupus medications, here.

The risks of stopping, or reducing the dose of, glucocorticoids vary from person to person. The main factor in such a decision should be your risk of relapse. For people at high risk, stopping prednisone, one of the main glucocorticoid medications, was associated with a four-fold risk of symptom onset.

When it comes to medications and all parts of your treatment plan, work with your lupus treatment team to identify what may work best for you.

Updated on August 31, 2020.