Lupus is an autoimmune disease that causes inflammation throughout the body. One of the hallmarks of lupus is that it goes through cycles of flares and remissions. During a flare, symptoms of lupus become more active as the immune system attacks healthy tissue. Flares can range from mild to severe. Between flares, many patients enter a period of remission where symptoms improve or even disappear completely.
What is a lupus flare?
A lupus flare refers to a period of increased disease activity where symptoms suddenly worsen. Some common symptoms of a flare include:
- Fatigue
- Joint pain or swelling
- Rash
- Fever
- Chest pain
- Shortness of breath
- Headaches
- Light sensitivity
- Confusion or memory loss
The exact symptoms experienced during a flare can vary widely between patients. Flares can range from mild to severe. In mild flares, symptoms may be an inconvenience but you can continue with normal activities. Severe flares can be disabling and potentially life-threatening if vital organs like the kidneys, heart, or brain are affected.
What triggers a lupus flare?
Doctors don’t fully understand why flares occur in lupus. However, certain triggers are known to potentially set off an episode of increased disease activity:
- Infections
- Stress
- Hormonal changes
- Medications
- Sun or UV light exposure
- Pregnancy
- Injury or surgery
Even with precautions to avoid these triggers, flares can still occur unpredictably in lupus patients. Ongoing communication with your healthcare team is important to identify and manage flares early.
How often do lupus flares occur?
The frequency of lupus flares varies a lot between patients. Some people with lupus experience only occasional flares while others have more persistent symptoms with frequent flares. On average:
- Around 50% of lupus patients have a flare about once per year
- Around 20-30% of patients have flares 2-3 times per year
- 10-20% of patients have more than 3 flares per year
People with more active or severe lupus tend to have flares more often. Milder cases may go years between flares. The frequency of flares can change over time too. Maintaining control of lupus requires paying attention to recurring symptoms and adjusting treatment as needed.
How long do lupus flares last?
The duration of lupus flares varies widely too, ranging from a few days to many months. In one study looking at patients with systemic lupus erythematosus (SLE):
- 29% reported flares lasting less than 1 week
- 58% reported flares between 1-12 weeks
- 13% reported flares lasting more than 12 weeks
Short flares of a week or less are more common with mild lupus. More severe flares often last for several weeks or months before entering remission. However, every patient’s experience can be different.
What is remission in lupus?
Remission refers to periods when lupus symptoms are under control and inflammation is minimized due to effective treatment. Many patients aim to achieve remission or low disease activity as their goal.
During remission:
- Symptoms are improved or absent
- Only low dose corticosteroids are required (if any)
- No major organ damage or activity occurs
- Overall sense of well-being returns
Remission does not necessarily mean a total absence of symptoms. Low levels of fatigue, joint pain, or rashes may persist. But overall symptoms are manageable.
How long can remission last in lupus?
The duration of remission periods is also quite variable in lupus. Some patients enjoy long remissions lasting for years between flares. For others, remission lasts for shorter periods before symptoms ramp up again:
- Around 20% of patients have long remission over 5 years
- Around 50% have remissions lasting 1-5 years
- Around 30% have shorter remissions less than 1 year
Working closely with your healthcare team can help prolong remission periods as long as possible. Avoiding potential triggers, managing stress, staying active, and finding the right medication regimen for you are all important.
What helps predict the length of remission in lupus?
Certain factors provide clues about how long remission may last for a particular lupus patient:
- Level of disease activity – Patients with low clinical activity and minimal involvement of major organs tend to have more sustained remission.
- Time since diagnosis – Remission periods tend to be longer early in the disease course before complications develop.
- Medications – Effective treatment regimens that control inflammation and autoimmunity help lengthen remission.
- Organ damage – The presence of damage to organs like the kidneys reduces the likelihood of extended remission.
- Age of onset – Younger patients often experience longer remissions than those with later onset lupus.
- Genetic factors – Variations in immune genes help predict disease course and response to treatment.
By monitoring these parameters closely, doctors can estimate the likelihood of prolonged remission in individual patients.
What is the longest remission period in lupus?
While average remission length may be 1-5 years, some patients do achieve extended periods of disease control. In exceptional cases, remission lasting 10 years or longer have been reported. Factors associated with the longest remissions include:
- Milder form of lupus that mostly affects the skin and joints
- Early treatment with medications to control inflammation
- Few or no flares in the first 5 years after diagnosis
- Younger age of onset under 40 years old
- No major organ complications like nephritis or neuropsychiatric lupus
- Good adherence to treatment and preventive strategies
With close disease monitoring and proactive treatment, the goal is to make remissions last as long as possible. While difficult to predict exactly, some patients can enjoy many years of reduced symptoms between flares.
What are the risks of lengthier remission periods in lupus?
While achieving long remission is desirable, it does come with some risks that patients and doctors must consider:
- False sense of security – Feeling good for years may lead to underestimating the underlying disease.
- Nonadherence – Patients may stop medications that are controlling their disease.
- Irreversible damage – Ongoing inflammation may cause organ damage that remains silent until later.
- Higher disease activity – Stopping medications can lead to the disease flaring worse than before.
Doctors recommend continuing regular monitoring and lab work even during long remission. Medications are typically continued as well, with any adjustments made cautiously under medical supervision.
Tips for maintaining longer remission with lupus
While the length of remission varies, the following strategies can help sustain periods of low disease activity:
- Closely follow your treatment plan and take medications as directed
- Attend regular appointments for evaluation even when feeling well
- Learn your personal flare triggers and try to avoid them
- Adopt healthy lifestyle habits – eating well, exercising, managing stress
- Use sun protection, rest, and pacing yourself to prevent flares
- Seek medical care early at the first signs of a flare
- Avoid smoking and limit alcohol which aggravate lupus
- Balance activity with rest to avoid fatigue
- Join a support group to help cope with challenges
Being actively involved in your care and developing self-management skills can go a long way towards prolonging remission periods.
What is the outlook for remission with lupus?
Early diagnosis and treatment of lupus has improved outlook compared to decades past. Many patients achieve lengthy periods of low disease activity and improved quality of life.
With a personalized treatment approach, close monitoring, and attention to preventing flares, the goal is to make remissions last as long as possible. Some patients enjoy years of stability even if intermittent flares occur. While hard to predict, the cycle of flares and remission can often be well-managed with today’s range of effective lupus treatments.
Conclusion
Lupus is unpredictable and flares occur periodically in most patients. However, the intervals between flares and duration of remission are highly variable. Some patients have infrequent flares and sustained remission lasting years. Close follow-up, medication adherence, and preventive lifestyles changes help control disease activity. While the course of lupus is difficult to predict, long remission is possible and should be the goal of ongoing management.
