The Indian Rheumatology Association
The Professional Organization of Rheumatologists and other Health Professionals in India
Systemic Lupus Erythematosus

What is SLE (Lupus)?
SLE [Systemic lupus erythematosus] is an autoimmune disease involving multiple body organs, usually
affecting women of childbearing age. Our immune system normally protects us against infections, but in illnesses such as lupus it attacks the body's own tissues. The symptoms depend on the organ affected
like joints, skin, kidneys, brain etc.

What happens in lupus?
Tirendness, joint pains and skin rashes are common. You may have a rash over parts of the body that are exposed to the sun. A butterfly-shaped rash over the cheeks and the bridge of the nose, mouth ulcers, hair loss and joint pains are common. You may also develop problems in other internal organs like kideneys(protein in urine, high blood pressure etc.), the brain(abnormal behavior, depression, fits, stroke), heart, lungs, blood ( anemia, low platelets, abnormal bleeding or clotting ), and other systems.

Who suffers from Lupus?
Lupus is about nine times as common in women as in men.

Lupus is more common in younger women. Lupus also affects children but only rarely.
We don't know exactly why this happens.

Why does Lupus occur?
Our immune system is the army protecting us from foreign foes. In Lupus, the protecting army gets abnormal and fails to recognize its own tissues and attacks them. This is probably caused by a combination of environmental, hormonal and genetic factors.

Lupus isn't contagious and is not directly inherited from your parents, though some of the genes inherited from parents may contribute to the development of the disease.

Are there any long-term risks in Lupus?
Lupus is a variable and unpredictable condition and can be life threatening for a minority of patients whose vital organs like kidneys, brain, heart, blood etc. are affected. However, with modern treatments and careful monitoring of the condition the disease can be brought under in most patients.

Anything more that I should know?
Keep out of the sun: Use a sun-blocking cream, SPF 25 a greater.

Contraception: You should use contraception pills that contain only progesterone or low-dose estrogen, or consider phyiscal/barrier mehods of contraception. Your treating doctor might help.

Infections: If you have Lupus, and especially if you are on immunosuppressive drugs, then you will more prone to infection. Take sensible precautions and avoid contact with family and friends who are known to have infectious diseases like tuberculosis, chickenpox etc.

Vaccinations: Check with your doctor if you might need vaccinations.

Stress: Stress will make your illness seem worse even if it dosen't affect the course of the disease. Learn how to manage any in your life.

Fatigue: Tirendness can be a significant problem. Specific causes of fatigue such as anemia or an underactive thyroid gland can be identified by a blood test and treated.

How is Lupus diagnosed?
A diagnosis of Lupus is made based on symptoms, a physical examination, and the results of blood tests like anti- nuclear antibody (ANA) test, Anti-DNA antibody test etc.

How is Lupus managed?
Lupus cannot be cured but it can be controlled. A number of different drugs may be needed depending on which symptoms you experience.

What are the various drugs to treat Lupus?
Skin rashes can be treated with creams containing steroids and/or with hydroxychloroquine tablets. They are also effective at treating most other problems in Lupus. Other drugs like steroids, azathioprine, cyclophosphamide, mycophenolate, cyclosporine etc are often used by doctors to treat Lupus. The drugs and modality of treatment depends on the organ involved. You might also require other drugs like blood pressure lowering drugs, calcium, etc. These are taken care of by your doctor/rheumatologist and you are advised to follow their advice.It is extremely dangerous to take or to stop these drugs on your own.Further, you require regular follow up with your doctor. Please keep your doctor informed about any problems while taking them or in case you develop new illness or contemplate or become pregnant.

Day to day activities

Exercise: Exercise as advised by your doctor can improve fitness without putting too much strain on the joints.

Diet and nutrition: There is only limited evidence available on the effect of diet in controlling Lupus. However, people with Lupus have an increased risk of having a heart attack or stroke. Therefore, it is important to take less fat and salt in your dietand stop smoking.

Pregnancy and Lupus
If you thinking of having a baby, discuss your plans with doctor before conception. There is conflicting evidence whether pregnancy is likely to cause a flare -up of Lupus. If the disease is well under control at the time baby is conceived, and you do not have kidney disease, you will number probably go through pregnancy with little trouble. A small number of women with very severe Lupus may be advised against having a baby as pregnancy can put a great strain on the heart, lungs and kidneys.The doctor looking after your preganancy check for this and consult your rheumatologist if necessary.

If you have high levels of antiphospholipid antibodies, then there is an increased risk of miscarriage.There is a small risk that babies born to Lupus mothers may have neonatal (newborn) Lupus syndrome.This means the baby may have a rash and / or a slow heartbeat. Most babies born to mothers with Lupus will be fine.Doctors are naturally cautious about which drugs are used during pregnancy. However, if required, some drugs like hydroxychloroquine, steroids and azathioprine are continued during pregnancy.

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