Systemic lupus erythematosus – Basic information for patients

Systemic lupus erythematosus (SLE / Lupus) is an autoimmune disease. Normally, immune system helps to protect our body from many bad things like infections and cancer. In autoimmune diseases like lupus, one’s own immune system starts attacking its own body. It can occur at any age (mostly 15 to 45 years but can occur in children too). It affects more women than men (9:1 ratio).

Please note that we will use the word SLE / Lupus in this article. Both will mean same disease.

The exact cause of SLE is not known. The risk of lupus is linked  with what genes are present in one’s body. It has also been found to be associated with environmental factors like sunlight exposure, certain medications, viruses, stress etc. However, in most patients, we don’t find any single gene or environment reason. Most likely, it is a combination of many things which causes someone to have SLE.

SLE can affect any system or organ of the body. Lupus patients can develop many different types of symptoms.

The most common lupus symptoms are,

• Fatigue or tiredness
• Skin rashes, which get worse on exposure to sunlight (see image 1). Many patients have a butterfly type of rash on face (see image 2).
• Joint pain, stiffness more in mornings and joint swelling
• Frequent ulcers (or sores) in mouth or nose
• Hair fall / loss
• Get cold hands and feet, which change colour to white or blue, especially when exposed to cold

Lupus patients can also have following symptoms or problems,

• Weight loss
• Frequent fevers without any infections detected
• Pain in chest while breathing
• Headaches and brain problems (like fits or seizures, mood swings, difficulty to think clearly, sudden psychotic or unusual behaviour, stroke or paralysis)
• Swelling and puffiness of hands, feet or eyes
• Eye problems – redness, vision problems
• Muscle weakness
• Recurrent miscarriages, blood clots etc.
• Vomiting, loose stools
• Passing less urine

It is not possible to list all symptoms of lupus here. Also, having above symptoms doesn’t itself mean one has lupus. Many of these symptoms like hair fall, fatigue, oral ulcers, swelling etc. are pretty common in people without having lupus. Lupus experts make sure that a patient is not having these symptoms due to other common causes. Most lupus patients will have a combination of many symptoms and experts will do further tests to confirm diagnosis.

When one thinks that a patient has lupus, it is best to get the patient evaluated by experts (Rheumatologist doctors / other experts). They go into details of symptoms, check, and after various investigations (blood tests, X ray, urine tests etc.), can make or reject a diagnosis of SLE.

SLE investigations can be very difficult to interpret and no single test can confirm it. Many tests ordered for SLE can come positive in normal people and some tests can be negative even if person has SLE. Hence, only an expert should make a diagnosis of SLE. Once it is confirmed that a patient has SLE, experts might have to do more investigations to find which organs are involved.

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Different types of drugs can be used to treat lupus. These are advised according to how severe the disease is and what organs are involved in the patient. The main aim of treatment is to bring lupus disease under control and prevent organ damage.

The drugs used in lupus are to control the overactive immunity which is attacking patient’s own body. They also help to decrease the inflammation in various organs.

• Non-steroidal anti-inflammatory drugs (NSAIDS) : These are drugs like ibuprofen, naproxen etc, especially given if patient has joint pains.
• Medicines like hydroxychloroquine and chloroquine :  They were originally discovered to treat malaria, but can help a lot in lupus patients.
• Steroids and other medications (like methotrexate, azathioprine, mycophenolate, cyclophosphamide, rituximab etc.) : These help to control or suppress the overactive immune system. Steroids are usually used only at start when disease is moderate to severe. They are very helpful to control disease to give relief and prevent organ damage. Later we use other medications and decrease steroids to maintain the control.

Experts in treating SLE use the drugs given below in best possible way to avoid or minimise the side effects.

SLE can be severe disease. But most people with SLE can live good lives, provided they show experts and follow their advice. Continuous research in SLE has made experts learn and improve a lot with regards to SLE treatment over last 20-30 years. They are far better in treating SLE now.

There is still no permanent cure for SLE. Most lupus patients will have lupus rest of their lives. It might be mild, moderate or severe. However we have very good treatment available and the experts provide maximum help to let SLE patients have a good life. SLE patients are likely to live for a long time. In some patients the disease can also become silent without problems for long periods.

Lupus can be a severe disease. Allopathy treatment of SLE has improved a lot with continuous research in last 20 – 30 years and continues to improve with more research. There is no good and thorough evidence that other options (Homeopathy, Ayurveda, natural therapies or Naturopathy) help to control SLE disease. Many patients trying these therapies exclusively develop organ damage which is irreversible. This is because if lupus is not well controlled, it can lead to organ damage. Allopathy can also have side effects, but it is the only form of therapy which has been shown to work without doubt in SLE patients. Allopathy has also been proven to prevent organ damage in SLE patients.

There are many herbs or supplements which can activate the immune system and cause kidney and liver failure. This can be harmful for lupus patients as their main problem is overactive immunity. If you are planning to take any extra supplements along with your allopathy treatment, please discuss this with your doctor before trying anything new.

There are many natural remedies which can be soothing to SLE patients – like using warm compresses, drinking green teas, using herb like basil leaves, etc in food, eating garlic, turmeric etc. Generally speaking there is no clear evidence that these things actually control SLE, but many of these things can giving variable relied to any patient with SLE. There is no harm in using them as long as you have discussed this with your rheumatologist (lupus specialist doctor) and you are following their advice.

There are higher chances of problems in pregnancy in SLE women as compared to normal female pregnancies. However, if things are done properly, most lupus patients have healthy babies. Lupus is not a hereditary disease and is not passed to babies as such.

It is important to let your treating doctor know if you want to plan a pregnancy in near future. The expert can guide you and take proper measures to avoid problems in pregnancy. For example, they will recommend avoiding pregnancy if your disease is active. However, once your disease is well controlled for at least 6 months, pregnancy can be safely planned under doctor’s advice.

• Have a healthy lifestyle : It can help lupus patients a lot. Eat healthy diet – lots of vegetables, fruits, nuts, dairy products, avoid sugar and refined foods etc. Stay active. Even mild home based exercises, walking and using stairs whenever possible, etc are good ways to stay active – It helps Lupus patients to keep muscles and bones strong. Avoid smoking or other addictions. Try to avoid / manage mental and physical stress. One can consider doing relaxation exercises – like meditation or mindfulness etc.
• Avoid excess sun exposure : Sunlight can cause a lupus rash to flare and may even trigger a serious flare of the disease itself. Use a good sunscreen with sun protection factor (SPF) of at least 30 or take doctor’s advice.
• Show an expert in lupus (like a rheumatologist) : Follow their directions
• Get educated about SLE : It is very important for patients to have good information and be educated about their disease, so that they can take better treatment decisions. They should ask their doctor to give with patient information material.
• Plan pregnancy : Do let your rheumatologist / doctor know if you want to plan pregnancy. It should be avoided if you have active disease. The doctor can guide with proper contraception methods or ways to avoid pregnancy till disease gets controlled.

Additional links for more information

https://www.versusarthritis.org/about-arthritis/conditions/lupus-sle/