Lupus is an autoimmune disease that can cause a wide variety of symptoms. Many lupus patients experience periodic flares, where their symptoms suddenly get worse before improving again. The first lupus flare can be alarming as patients don’t know what to expect. Understanding what a flare feels like can help patients identify flares early and get the right treatment.
What is a lupus flare?
A lupus flare, also called a flare-up, refers to a period when lupus symptoms suddenly get worse. It is caused by increased autoimmune activity, where the immune system attacks the body’s own healthy cells and tissues. This leads to new symptoms, or old symptoms becoming more severe. A flare can last for days, weeks or even months before the symptoms improve or go back to previous levels.
Lupus flares are unpredictable and can occur after periods of remission when symptoms are minimal. Flares can be triggered by things like infections, stress, hormones, medications, and excessive sun exposure. The frequency and severity of flares varies greatly between patients. Some have occasional mild flares while others have regular flares with severe symptoms.
Common symptoms during a lupus flare
The specific symptoms experienced during a lupus flare depends on which parts of the body are being attacked by the immune system. Some of the most common symptoms include:
Fatigue and weakness
Most lupus patients report increased exhaustion and weakness during a flare. This fatigue is more than just feeling tired – it is an overwhelming feeling of being drained of energy. Even small tasks can feel monumental. The fatigue usually forces patients to rest more than normal.
Joint pain, swelling and stiffness
Around 90% of lupus patients experience joint pain during flares. The small joints in the hands and feet are most commonly affected. Joints become tender, swollen and stiff, which intensifies with movement. The pain ranges from mild to severe. Some report joint pain so excruciating that it wakes them from sleep.
Skin rashes
Skin problems are seen in around 70% of lupus flare ups. Some common lupus rashes include:
- Butterfly rash on cheeks and nose
- Disc-shaped raised red patches
- Red spots or dots on skin
- Raynaud’s phenomenon causing fingers to turn white, blue or red with cold
- Skin sensitivity to sun exposure
Rashes are usually itchy, scaly and worsen with sun exposure. New rashes can develop while existing ones spread or get more inflamed during a flare.
Fever
Low grade fevers around 100°F are common during lupus flares. In some cases, higher fevers over 101°F can occur. The higher the fever, the more severe the flare is likely to be. Fevers are a sign of increased inflammation in the body.
Hair loss
Hair thinning and hair loss often happens during lupus flares. It is usually mild temporary hair thinning all over the scalp. In some cases, more noticeable clumps of hair loss can occur due to the skin inflammation around hair roots. Hair shedding reduces once the flare ends.
Headaches
Many lupus patients experience severe headaches before or during a flare. The headaches are often described as debilitating migraines. They can last for hours or days and are resistant to usual headache medications.
Sensitivity to light and noise
Increased sensitivity to bright lights and loud noises is common. Even normal lighting can seem too bright and cause discomfort. Exposure to sunlight usually aggravates rashes and other symptoms.
Mouth sores
Ulcers in the mouth appear in about 30% of lupus patients during flares. They usually form on the roof of the mouth or gums. The sores range from mild to quite painful, making it difficult to chew and swallow.
Chest pain
Some patients experience chest pain as the lining around the lungs and heart become inflamed. The chest pain can feel sharp and stabbing, or a dull ache. It is often worsened by deep breathing. However, the pain is not related to the heart.
Shortness of breath
Breathing difficulties can occur when the lungs are affected. Fluid can build up in the lungs, causing shortness of breath, especially with exertion. A dry cough may also be present.
Other less common symptoms
Less frequent symptoms linked to lupus flares include:
- Blood clots
- Swelling in the legs or around eyes
- Anemia
- Problems with memory and concentration
- Changes in personality and behavior
- Seizures
- Dizziness
- Loss of appetite
First lupus flare
The first lupus flare is likely to feel alarming for newly diagnosed patients as they don’t know what to expect. Usually the first flare:
- Occurs within the first year of being diagnosed with lupus
- Lasts from a few weeks to a few months
- Symptoms are changeable and evolve day-to-day
- Severe fatigue is one of the most common symptoms
- Joint pain, skin rashes and fever are also very common
- Usually more than one symptom flares up at a time
The first lupus flare helps set the pattern for future flares. Many patients find their flares follow a predictable pattern in terms of sequence of symptoms and length. Recognizing this pattern helps patients identify the start of a flare more quickly so treatment can begin sooner.
What causes a flare?
Doctors don’t fully understand why lupus flares occur, but certain triggers are known to set them off:
Infections
Infections are a very common flare trigger. Any type of infection – viral, bacterial, fungal, parasitic – can kickstart a flare. Common triggering infections include urinary tract infections, respiratory infections, yeast infections, salmonella, shingles and mononucleosis (mono).
Stress
Physical or emotional stress is another major flare trigger. Things like a job loss, divorce, trauma, surgery, injury, childbirth and bereavement can all set off a lupus flare within weeks of the stressful event. Ongoing high stress levels also promote flares.
Medications
Many common medications like antibiotics, diuretics, birth control pills, and anti-seizure drugs can trigger lupus flares. This is because they interact with the immune system. Vaccinations can also cause flares.
UV and sunlight exposure
Sunlight contains ultraviolet (UV) rays that stimulate the immune system. This makes sun exposure and UV light a big trigger for skin rashes and flares. Some types of artificial lighting also emit UV rays.
Hormones
Female hormone fluctuations are a common flare trigger. Many women experience worsening symptoms before their menstrual period when estrogen levels drop. Flares are common during pregnancy as hormone levels change dramatically.
Blood pressure drugs
Medications that lower blood pressure, like hydralazine, methyldopa and some diuretics, can provoke lupus flares. Patients may need to switch to another type of blood pressure medication.
Stop taking medications
Abruptly stopping certain medications can initiate a flare, especially corticosteroids and antimalarial drugs used to treat lupus. Do not stop any lupus medications without medical supervision.
How is a flare diagnosed?
A doctor will diagnose a lupus flare based on the typical symptoms and physical examination findings. They will review symptoms, ask about potential triggers, conduct an examination and order blood tests.
Blood tests look for changes in inflammation markers like erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP), reduced red blood cell and white blood cell counts, elevated antibodies and impaired kidney and liver function. Urine tests also help assess kidney involvement.
Sometimes additional tests like Imaging (x-rays, CT scan, MRI), skin biopsy or kidney biopsy are done to check for organ damage.
Treatment for lupus flares
Treatment focuses on calming the overactive immune system and managing symptoms during the flare. It includes:
NSAIDs
Non-steroidal anti-inflammatory drugs like ibuprofen help reduce inflammation and joint pain. NSAIDs also decrease fever.
Corticosteroids
Corticosteroid drugs like prednisone suppress the immune system to control inflammation. They are used in short courses of several weeks for severe flares. Long term use involves lowest possible doses to avoid side effects.
Immunosuppressants
Drugs like methotrexate, azathioprine, mycophenolate mofetil and cyclophosphamide dampen immune system activity. They may be prescribed or increased in dose to treat flares.
Antimalarials
Hydroxychloroquine is an antimalarial drug commonly used in lupus. Increasing the daily dose for 6 to 12 weeks can help manage mild or moderate flares.
Biologics
Newer drugs like belimumab (Benlysta) specifically target immune cells involved in lupus. Biologics are sometimes prescribed to reduce flare frequency.
Avoid flare triggers
Patients should avoid potential flare triggers like infections, sun exposure, smoking, alcohol, high stress, known medication triggers, and fatigue during flares.
Rest and relief
Getting adequate rest, using hot and cold compresses, massage, gentle stretching, meditation, stress management and maintaining a healthy diet helps provide relief during flares.
Visit a rheumatologist
It is crucial to be evaluated by a rheumatologist during a flare, even if your regular doctor is managing your lupus. A rheumatologist specializes in autoimmune diseases and can best assess if treatment changes are needed.
Tips for coping with a lupus flare
Flare ups can be physically and emotionally exhausting for lupus patients. Here are some tips to help cope:
Listen to your body
Rest as much as possible and avoid overexerting yourself during a flare. Let go of nonessential chores and activities. Respect your limits.
Ask for help
Don’t hesitate to enlist friends and family to help with errands, housework and childcare while you recover. Hire a cleaning service if needed.
Communicate with work
Inform your employer and colleagues about your flare, so they understand if you need accommodations like working from home, flexible hours or disability leave.
Join a support group
Online or in-person lupus support groups connect you with others facing similar challenges. You can share coping tips and feel less alone.
Try stress-reduction techniques
Practices like mindfulness, meditation, yoga, tai chi, massage and breathing exercises help lower stress during flares.
Focus on positives
When you feel discouraged, reflect on things you are grateful for. Spend time doing hobbies you enjoy, like reading or puzzles.
Be kind to yourself
Don’t feel guilty about needing to rest and take it easy. Remind yourself that flares are temporary setbacks.
Preventing lupus flares
While flares can’t always be avoided, the following self-care tips can help reduce their frequency and severity:
- Take medications as prescribed
- Develop a flare emergency plan with your doctor
- Learn your flare triggers and try to avoid them
- Reduce stress with relaxation techniques
- Get enough sleep
- Follow a balanced, nutritious diet
- Stay active with regular moderate exercise
- Stop smoking and limit alcohol
- Practice sun protection – use sunscreen, protective clothing and hats
- Stay up to date with vaccines to prevent infections
- See your rheumatologist for regular checkups even when feeling well
When to seek emergency care
Most flares can be managed on an outpatient basis. But some symptoms require urgent medical attention:
- Difficulty breathing or chest pain
- Severe headache or confusion
- Vision problems or eye pain
- Facial drooping
- Dizziness, weakness or loss of coordination
- Abdominal pain
- Heavy bleeding or bruising
- Suicidal thoughts
Seek prompt medical help if you experience these worrisome flare symptoms. Call 911 or go to the nearest Emergency Room.
Conclusion
The first lupus flare can be a disconcerting experience as the onset of new symptoms are puzzling and unpredictable. While flares disrupt daily life, most settle down within weeks to months. Being aware of common flare symptoms allows for early self-detection so treatment can begin quickly. Open communication with medical providers ensures flares are managed appropriately. With the right coping strategies, flares can be overcome and long term remission is possible.
