Can Lupus Go Into Prolonged Remission?

Systemic lupus erythematosus (lupus) affects each person differently—family members, siblings, and even twins who live in similar environments may find that their disease course presents very differently from one another.

The first five years after being diagnosed can be particularly uncertain as patients and their healthcare providers figure out the best individualized treatment plan. But as the medical treatment of lupus evolves, many wonder if their lupus can go into prolonged remission.

What the Research Says

Most research cites remission as the resolution of symptoms for three or more months. This number can vary, with some studies citing remission as a resolution of symptoms for three or more years.

An Italian research study conducted in 2015 found that more than one-third of patients with lupus treated according to current standards were able to achieve prolonged remission.

Another study found that a high baseline of treatment was the major predictor of longer remission times. African-American ethnicity, baseline low complement C3 and baseline hematological activity were associated with longer time to remission for all definitions. The median duration of remission for all definitions was three months.

Still, others contend that genetic and environmental factors may play an even bigger role than medication compliance in achieving remission.

Lupus in Women

Lupus disproportionately impacts women, especially Black identifying women of color of African or LatinX descent. In fact, women of color are 10 times more likely to have lupus than men and three times more likely to develop lupus than White women, therefore much of the research focuses on this population.

Despite increasing awareness of SLE and advancements in treatment, mortality among people with SLE remains high and more research needs to be done to figure out why that is.

Relapsing-Remitting State of Lupus

Lupus is a chronic autoimmune condition that causes inflammation throughout the body. In some people a lupus flare can present as:

• Inflammation of the joints
• Chest pain, especially while breathing
• Extreme fatigue
• Swelling of the hands
• Headaches
• Low fevers
• Sensitivity to sunlight or fluorescent light

Periods of flaring followed by spontaneous remission of the disease are common. The medical community does not know why this relapsing and remitting course takes place. In some people, lupus remains in a chronic state of activity, while others may have a flare once every few years, or every 10 years, and be in a quiescent state the rest of the time.

Disease activity in lupus follows three different courses: long quiescent, relapsing remitting, and persistently active. A 2019 study found that approximately 70% of lupus patients followed a relapsing-remitting course, whereas 10% displayed prolonged remission and another 10% a persistently active course. Of note, early response to treatment was associated with a less severe course and better prognosis.

Does Medication Lead to Remission?

Can lupus go into prolonged remission if you take your medication regularly? The short answer is maybe. Lupus is unpredictable. Furthermore, clinical remission does not necessarily mean that one is no longer experiencing flares or symptoms.

As mentioned above, some studies have found that early treatment of the disease can increase one's chances of sustaining or achieving prolonged remission of their lupus symptoms.

Still, even with strict adherence to an anti-inflammatory diet, exercise routine, and adherence to an individualized medication regimen, lupus is unpredictable and there are no definitive guidelines that promise prolonged remission.

Prolonged Remission Without Medication?

A 2016 British study that tracked 532 symptomatic patients found that nearly 20% of patients achieved complete remission for at least three years without medication (14.5% for three or more years and 4.3% for 10 years or more, respectively). The role that their environment and genetics played in their status is unknown.

Complete remission was defined as a period of at least three years with clinical inactivity; laboratory remission (no antibodies to double-stranded DNA and normal complement C3 levels); and being off-treatment with corticosteroids and immunosuppressants, although antimalarial and non-steroidal anti-inflammatory drugs were allowed.

Of note, despite some achieving clinical remission, many of the study participants continued to experience flares, emphasizing the need for everyone with lupus to continue to take their medication as prescribed and continue with longterm follow-up with a healthcare professional.

What Can I Do to Achieve Remission?

While there are no set guidelines that promise remission, the Lupus Foundation of American and the American Academy of Rheumatology strongly encourage anyone with lupus to follow this advice:  

• Take your medication as often as prescribed.
• Create a positive balance in your life that respects your limitations but still allows you to follow your dreams.
• Tell your healthcare provider or a healthcare professional about all new symptoms that may pop up.
• Eat a balanced diet.
• Get plenty of sleep.
• Stay active. Get plenty of exercise.
• Avoid sun exposure.

Abiding by these guidelines is especially important for women who wish to become pregnant. To lower risks of pregnancy complications, healthcare professionals suggest that women carefully plan her pregnancy.

A multidisciplinary approach to caring for pregnant patients with lupus is essential to optimize outcomes. Many women with lupus have uncomplicated pregnancies, with their care sometimes being led by a rheumatologist and an obstetrician-gynecologist.

Prognosis and Coping

Most people with lupus can live normal lives. Improvements in treatment have resulted in a greater quality of life and an increased lifespan. As important, a good healthcare provider-patient relationship and support from family and friends can help you cope with this often unpredictable illness.

Throughout your life you may experience a series of emotions such as sadness, anger, or anxiety, especially as you learn to manage your symptoms. These emotions can have a big impact on the lives of young people, especially at the time of diagnosis.

If you are experiencing any of these feelings take a moment to unpack them and provide time to talk about them with your family, friends, or healthcare provider.