Understanding Lupus (SLE): A Simple Guide for Patients and Caregivers

By Dr. Nitin Thyagaraja

What Is Lupus?

Lupus (Systemic Lupus Erythematosus, or SLE) is a long-term autoimmune illness. The immune system protects the body by recognizing and destroying harmful germs like bacteria and viruses, while usually leaving the body’s own healthy cells unharmed.

As the word states, "auto-immunity" is a condition where your immune system becomes overactive and starts attacking healthy parts of your own body.

It can affect your skin, joints, kidneys, blood, heart, lungs, and brain.

Lupus usually has ups and downs - times when you feel worse (called flares) and times when you feel normal (called remission).

This is similar to other chronic health issues, such as diabetes mellitus or hypertension - there are periods of normalcy and then there are times when it might get worse. 

Lupus is not contagious, and it’s not your fault. You didn’t cause it.

With today’s medicines and proper care, most people with lupus live full, active lives.

Lupus through history

Lupus is not new. People across ancient civilizations noticed illnesses that look very much like lupus, even though they didn’t have the modern name for it.

In Ancient India (Ayurveda)

Ancient doctors like Charaka and Sushruta described conditions where the blood and body became “inflamed” - causing rashes, fevers, tiredness, and joint pain.

They called these “Rakta disorders.” Their treatments included herbs, rest, and ways to calm body heat - similar to how we now try to control inflammation in lupus.

In Ancient China

Traditional Chinese medicine books describe illnesses called “blood-heat” or “yin deficiency”, where people (mostly women) had red rashes on the face that worsened with sunlight - very similar to the butterfly rash seen in lupus.

In Ancient Egypt and Greece

Egyptian papyrus scrolls (written more than 3,000 years ago) mention people with long-lasting fevers, skin sores, and fatigue. Greek doctors like Hippocrates wrote about chronic rashes and ulcers. By the Middle Ages, doctors used the Latin word “lupus” (meaning “wolf”) to describe facial sores that looked like a wolf’s bite, which we now know were likely from lupus.

In Ancient Mesopotamia

Clay tablets from Babylonia and Assyria mention red facial rashes, joint pain, and weakness - again pointing to the same disease, we know today as lupus.

So even thousands of years ago, people knew lupus - they described it in the language and beliefs of their time.

Why does Lupus affect women more, than men?

About 9 out of 10 people with lupus are women, mostly between the ages of 20 and 40.

Doctors and scientists think this happens for a few main reasons:

1. Hormones

The female hormone estrogen can make the immune system more active. That’s helpful for fighting infections, but it can also make it easier for the body to attack itself by mistake. Estrogen levels rise during the childbearing years - exactly when lupus often starts.

2. Genes

Many immune-related genes sit on the X chromosome. Since women have two X chromosomes, they might have extra activity in some of those immune genes. This can make the immune system more likely to become overactive.

3. Immune differences

Women’s immune systems are naturally stronger. That helps fight infections better than men - but, it also increases the risk of autoimmune diseases like lupus.

4. Role of emotional and stress factors

Experts also think that stress and emotional strain may play a small part. Women often face more emotional pressure or caregiving roles, which can affect hormones and the immune system. Strong emotions or long-term stress don’t cause lupus, but they can sometimes trigger flares in people who already have it.

Remember, biology may have made women the bearers of life, but experience has made them the bearers of endurance - able to adapt, recover, and protect not just themselves, but everyone they love.

Common symptoms of Lupus

No two people with lupus have the same symptoms.

Some have only mild rashes, while others have deeper organ problems.

Here are some common signs to watch for:

• Tiredness: Feeling extremely tired even after a good night’s sleep.

  
  
  
  

• Joint pain and stiffness: Especially in the hands, wrists, and knees.

  
  
  
  

• Skin rashes: The “butterfly rash” across the cheeks and nose is classic.

  
  
  
  

• Sensitivity to sunlight: Rashes or fatigue that worsen after being in the sun.

  
  
  
  

• Hair loss: Hair becomes thin or breaks easily during flares.

  
  
  
  

• Mouth or nose sores: Usually painless, but a strong clue for lupus.

  
  
  
  

• Fever: Low-grade fevers without infection.

  
  
  
  

• Chest pain: From inflammation around the lungs or heart.

  
  
  
  

• Brain fog or headaches: Trouble thinking clearly or memory problems.

  
  
  
  

• Swelling: Especially in the legs or around the eyes - could mean kidney involvement.

  
  
  
  

If you notice several of these symptoms together, it’s important to see a rheumatologist (a doctor who specializes in immune diseases).

How is Lupus treated?

There’s no single “cure” yet, but the right treatment helps control lupus very well.

Doctors aim to reduce flares, protect organs, and help you feel your best.

Main Treatments

• Hydroxychloroquine: The most common medicine for lupus. It helps control rashes, fatigue, and joint pain and reduces flares.

  
  
  
  

• Steroids (like prednisone): Quickly calm inflammation during flares, but are used only for short times because of side effects. Often, the most reliable class of medication to treat autoimmunity, and hence might be continued long term if other medications fail to keep the patient in a state of remission. Note that the steroids used to treat lupus are different from the ‘steroids’ used by bodybuilders.

  
  
  
  

• NSAIDs (like ibuprofen): Help with pain and swelling. But NSAIDs are often taken only upon careful prescription from your doctor, even if they might be available without a prescription.

  
  
  
  

• Immunosuppressants (like azathioprine or mycophenolate): Used for stronger disease or when organs are affected.

  
  
  
  

• Biologics (like belimumab and anifrolumab): Newer medicines that target specific parts of the immune system.

  
  
  
  

Self-Care Is Just as Important

• Avoid too much sun. Always use sunscreen (SPF 50+), wear hats, and stay in the shade.

  
  
  
  

• Eat healthy. More fruits, vegetables, whole grains, and water; the idea is to eliminate highly processed food, which is low in nutritional value, and include more fresh food in the diet, when there are no barriers to accessing them. It's always a good idea to avoid alcoholic beverages, even for the general population.

  
  
  
  

• Exercise gently. Walking, yoga, aerobics, zumba, swimming, etc. can reduce stiffness.

  
  
  
  

• Sleep and rest. Flares often follow exhaustion or stress.

  
  
  
  

• Stay calm. Meditation, talking with friends, or counseling helps control stress.

  
  
  
  

• Don’t smoke. It worsens lupus and risk of heart-related issues.

  
  
  
  

• Regular check-ups. Be regular with your follow-ups with a rheumatologist to ensure all checks and balances are taken care of.

  
  

Possible Complications

Lupus can affect many organs, so doctors monitor you closely.

Some possible problems include:

• Kidney disease (lupus nephritis): Swelling in the legs, foamy urine. This needs quick attention.

  
  
  
  

• Heart and lung inflammation: Chest pain or breathlessness.

  
  
  
  

• Anemia or low platelets: Can cause tiredness or easy bruising.

  
  
  
  

• Blood clots: If you have antiphospholipid antibodies.

  
  
  
  

• Nervous system issues: Headaches, seizures, or confusion ( which are rare).

  
  
  
  

• Infections: Because medicines can lower your immune defenses.

  
  
  
  

• Bone thinning: From long-term steroids.

  
  
  
  

• Pregnancy risks: Since pregnancy is a state of high levels of immune activity, careful planning and collaboration are needed between you, your rheumatologist, and your obstetrician to ensure a safe pregnancy.

  
  
  
  

The good news: With modern treatment, 9 out of 10 people with lupus live normal life spans.

It is also very important to establish an early diagnosis of lupus and start treatment early so that your body does not accumulate any irreversible damage due to these complications. 

What’s Ahead: The Future of Lupus Treatment

Research is moving fast. Here’s what doctors are excited about:

1. Better drugs: New medicines that target specific parts of the immune system with fewer side effects.

   
   
   
   

2. Personalized care: Tests that help doctors choose treatments based on your own genes and antibodies.

   
   
   
   

3. Early flare warning tests: Blood tests that might predict a flare before it starts.

   
   
   
   

4. Stem cell and gene therapy: Experimental but promising for resetting the immune system.

   
   
   
   

5. Holistic care: Combining medical treatment with mental health support, good nutrition, and exercise.

   
   
   
   

6. Digital tools: Apps and wearables that help track symptoms and alert doctors early.

   
   
   
   

The message is clear - the future looks brighter than ever for people with lupus. While the current advancements in modern medicine help us only to keep lupus under remission, just like we keep other chronic health issues under remission, the horizon looks bright, and we shall support the research community to get as close as possible to a complete cure.

Lupus has been known to humankind for centuries, but today’s understanding and treatments are better than ever.

You can live well with lupus by learning about it, taking medicines regularly, protecting yourself from the sun, managing stress, and keeping in touch with your healthcare team.

Remember - you are not alone.

If you are a patient or a caregiver to a patient, you can get in touch with members of Lupus Trust India to join the wonderful community of patients.

We are here for you forever, to help you make your life as a lupus warrior not just close to normal, but to establish a new normal that is abundant. Your voice, like the hundreds of others in the patient community, matters a lot more than you can imagine. 

About Author:

Dr. Nitin Thyagaraja (Tata Digital Health, NIMHANS, Marietta Medical Clinic) is a general physician and medical volunteer at Lupus Trust India. He divides his time between India and the U.S.