Lupus—systemic lupus erythematosus—is a chronic and often disabling autoimmune disease.
The prevalence reported in India is 3 per 100,000 which is much lower figure reported than western data (124 per 100,000 in USA while 12.5 per 100,000 population in UK).
No Two Cases Are Alike
No two cases of lupus are alike. Some people develop kidney problems, for example, while others get premature heart disease and others still suffer from strokes or develop lung inflammation. Symptoms, and the course of the disease, vary widely.
Most are young women of childbearing age, and suffer from such symptoms as intense fatigue and exhaustion, joint pains, thinking and memory problems, and skin rashes.
What is SLE (Lupus)?
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 kidneys (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?
Although the cause of lupus is unknown, genetics and hormones are thought to play a role. Lupus is about nine times as common in women as in men.
The majority of people with lupus—90 percent—are female, and most first develop signs and symptoms of the illness between the ages of 15 and 44.
As adults, far fewer males than females develop lupus.
Lupus also affects children but only rarely .We don’t know exactly why this happens. Most likely, a person inherits genes that make him or her more susceptible to this illness, and events in the body or the environment such as hormone surges, infections, stress, or exposure to sunlight trigger the illness. Lupus is not contagious—a person can’t “catch” or “give” lupus to another person. About one in three children with lupus have mild disease, but most have a moderate disease that may be severe at times, but usually responds well to treatment
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.
Although no two cases of lupus are alike, there are symptoms—things that a person with lupus feels or experiences as opposed to a doctor testing for—that many with the disease notice. Common complaints include the following:
- Swollen, stiff, and painful joints
- Fever over 100 degrees F
- Rashes on the skin and/or sensitivity to the sun
- Swelling around the ankles
- Chest pain with deep breaths
- Unusual hair loss
- Pale or purple fingers from cold or stress
- Mouth ulcers, often painless
In some cases of lupus, several of these symptoms develop at once in what is called a “flare.”
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?
Lupus is chronic and complex, and is often difficult to diagnose.
There is no single laboratory test that can determine if a person has lupus. To complicate matters, many symptoms of lupus are similar to those of other diseases, and can come and go over weeks and months. It can often take years for a diagnosis to be made.
To diagnose lupus, a doctor should be able to find physical or laboratory evidence of the condition, such as swelling of joints, protein in the urine, fluid around the lungs or heart, or a skin biopsy (test of a sample) that shows evidence of the disease. The doctor also will look at a person’s medical history and special tests to rule out other diseases
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.
While there is no cure for lupus, early diagnosis and treatment can help in managing the symptoms and lessening the chance of permanent damage to organs or tissues. Because lupus is different for every person, treatments and medications are prescribed based on individual needs.
For mild cases of lupus, medicines may include over-the-counter pain relievers and anti-inflammatory medicines.For more severe lupus, or when internal organs are affected, stronger prescription drugs are prescribed to quiet the immune system and protect organs such as the kidneys, heart, and lungs from further attack.
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 in LUPUS
Exercise: Exercise as advised by your doctor can improve fitness without putting too much strain on the joints. We all know that the benefits to exercise outweigh the drawbacks. Of course, it’s important to first get your doctor’s permission before starting any type of exercise regimen. The most difficult part of exercising is getting the motivation to start, and fighting through the initial pain. Everyone can exercise as long as they commit to it, and know their limitations. The benefits are endless. Along with reducing your risk of injury, speeding weight reduction, and helping to keep you flexible and coordinated, exercise is great for stress relief. It’s also a natural anti-depressant and self esteem-booster, and can enable you to widen your circle of friends. When you need motivation, just remember all of the benefits!
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 diet and 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.