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What is SLE ?
SLE or Systemic Lupus Erythematosus is an autoimmune disease occurring almost exclusively in females of child bearing age. It is a complicated disease that affects predominantly skin, mouth and oral mucosa, joints ( especially small joints of hands and legs ), hairs , kidneys, nervous system, lungs and heart.
The common symptoms are loss of hair, skin rashes that increases with exposure to sunlight, facial rash ( Butterfly malar rash ), oral and tongue ulcers, joint pain and bodyache, generalised weakness and often low grade fever.
How is SLE diagnosed?
Diagnosis of SLE is a clinical challenge to the doctors. We try to correlate the classical clinical symptoms as mentioned above with some blood tests while diagnosing SLE. If the blood reports show low haemoglobin, low WBC count, Normal CRP, Positive Anti Nuclear antibody ( ANA > 1:80 titre ), positive anti ds DNA antibody , low C3 and C4 and protein leakage in urine, then the diagnosis of SLE is almost certain.
However, there is a wrong notion even among the doctors (especially general physicians and orthopedicians) that ANA positivity is equivalent to SLE. Thus, SLE is often misdiagnosed. It is always prudent to consult a Rheumatologist for symptoms like those.
Why such multi-organ damage does occur in SLE?
The problem is SLE lies in our immune system (body defence system). In a normal individual, our immune cells and chemicals are programmed to attack and destroy any organism that are foreign to our body and thus in spite of billions of microbes and bacteria in the surroundings we hardly develop any infection.
In SLE, the same immune defence system programming is faulty. Apart from protecting the body and its organs from external microbes, they are wrongly programmed to attack some of our own organs and cells of the body. The cause of this wrong programming is complicated, but there is no solution in medical science for reversing the process.
Thus, in SLE, our own defence system continuously keeps on attacking and destroying multiple organs of our body and what we can do as doctors is just to control the intensity of the damage there by preventing and delaying the organ death.
My blood test shows ANA is positive. Does that mean that I am suffering from SLE?
This is a very important and relevant question. As it has been already mentioned, presence of suggestive clinical symptoms is mandatory to interpret a positive ANA result. See the next question for suggestive clinical symptoms.
The following statistics will give an idea how ANA positive result can easily be misinterpreted. At anytime, there are 32 patients of SLE out of 10, 00,000 (One million) individuals in India. That makes it extremely rare. But if ANA is tested in 10,00,000 individuals, chances that ANA will be positive will be found in 90,000 individuals, that is 9 out of 100 persons are positive for ANA.
Thus there will be one person truly suffering from SLE out of approximately 2800 persons who are ANA positive.
What are the clinical symptoms suggestive of SLE?
The clinical symptoms suggestive of SLE are enlisted below in a descending order of frequency of occurrence.
1. Generalised weakness, fatigue, bodyache
2. Loss of hairs
3. Oral Ulcers ( often painless )
4. Facial rash over the cheeks ( looks like a butterfly )
5. Skin rashes that aggravates on Sun exposure
6. Pain and swelling of small joints of hands and legs.
7. Swelling of feet
8. Shortness of breath
9. Weakness or paralysis of a part of body
Remember, SLE occurs in females almost exclusively although males can be affected with a female to male ration is around 9:1. They can also affect children and rare beyond the age of 60 years.
Thus, it implies that if any two of the above mentioned symptoms are present, one should immediately run to a rheumatologist for evaluation although there are much more common causes of these symptoms.
Is it possible to get SLE cured?
No. Till date SLE is a non curable disease. The disease activity can be well controlled with medicines and the patient can achieve a normal quality of life. There is no reason to get stigmatised with this disease as there are millions of SLE patients who are doing as well as a normal individual in their respective fields.
Can a SLE mother transfer the disease to her child? What are the chances?
The chances that a SLE affected mother will transfer the disease to her child, is almost negligible. Kindly note that if the child develops SLE , it is actually a coincidence rather than heredity. Almost 90% of SLe patients do not have anybody suffering from SLE in their family. Even, the siblings are also not affected in majority of the cases.
Should a SLE lady refrain from planning a pregnancy? Is it safe to go for planning a pregnancy with SLE?
A SLE mother can go for planning a pregnancy without any confusion in mind. Pregnancies in SLE mothers are successful and babies are healthy. But, there are few important words that should be in the knowledge of the SLE parents.
1. The disease activity of SLE in the expectant mother should be under control or in low state before planning a pregnancy. If a SLE mother becomes pregnant when the disease is active, the mother and the baby, both may suffer from complication which includes midterm loss of pregnancy.
2. If there is any history of loss of pregnancy especially in between 13th to 24th week of pregnancy, it is mandatory to declare this information to the treating doctor. A parallel disorder called anti phospholipid antibody syndrome often coexists with SLE mothers which are notorious in causing repeated loss of pregnancies around the aforesaid duration of pregnancy.
3. Rarely, a SLE mother can deliver a child with congenital heart block. It’s a condition where the baby’s heart rate is drastically reduced and can be detected even when the baby is in mother’s womb. This condition needs pacemaker implantation in baby’s heart for survival. Although, the frequency is very less, but the mother should always be screened for an antibody called Anti Ro antibody which if transmitted to the baby, may result in this bad condition. If the mother is tested positive for anti Ro Antibody, she should undergo periodic trans-abdominal Doppler scan of baby’s heart to detect drop in heart rate. Normal heart rate of a baby in mother’s womb varies around 130 to 150 beats per minute.
4. A SLE mother should refrain from taking medicines that can harm her baby in the womb. The medicines which are strictly contraindicated in pregnant mothers are methotrexate, sulfasalazine, mycofenolate mofetil and cyclophosphamide. Steroids in low dose are safe in pregnancy but the choice of steroid is important. This needs to be decided by the rheumatologist with caution. Painkillers or NSAIDs are safe till 24th week of pregnancy. Drugs like Hydroxychloroquine and Azathioprine are safe in pregnancy.
Do I need to take steroid medicines throughout my life?
The only medicine that needs to taken throughout the life unless the side effects develop is Hydroxychloroquine Sulfate. Steroids are indeed necessary to control the disease activity when it is not controlled by other medicines such as Hydroxychloroquine Sulfate, Azathioprine or Mycophenolate Mofetil. Its worth mentioning that majority of SLE patients require continuous steroid treatment over most of the days in a year. However, there are individuals who either do not need steroids or are on a microscopic dose of steroid for control of disease activity.
What else do I need to know if I am suffering from SLE?
SLE is a disease with no cure and in the fight with SLE, you have to team with your rheumatologist. The rheumatologist will try his best to explain the disease and its course and management strategy to you but its your responsibility to play your part of the role.
1. Become knowledgeable: Know all the do’s and don’ts of SLE. Get answer to all the “Wh” questions regarding SLE. i.e. Why? Who? When? What? Go through the knowledge resources, talk to fellow patients. Remember, SLE has a vast spectrum of disease severity ranging from minimum disease to fatal complications. Hence, each patient is different and the treatment is often invidualised. Not all of them will develop adverse effects of the drugs. Some tolerate Methotrexate well, some other will develop oral ulcers, loss of appetite, nausea to the medicine.
2. Avoid Sun Exposure: Sun rays contain Ultraviolet rays. These ultraviolet rays on hitting on the skin can cause microscopic damage to the cells of the skin and underlying structure. A damaged healthy cell is a potential trigger from skin manifestation fo SLE. Use sunscreen lotion or umbrella while going out of the house. The Sunlight Protection Factor (SPF) should above 50.
3. Avoid extravagant lifestyle: By the term extravagant lifestyle, we mean smoking, alcohol, junk foods, stressful life and red meat. There is an idea regarding anti inflammatory diet which helps in controlling disease flares and it consists of the following:
a. Low fat , Low calorie, Moderate Protein diet
b. Rich in colourful fruits and avoidance of fruit juices (Both synthetic and fresh fruit juice).
c. Avoidance of smoked food and red meat
d. Avoid sugar, sweet, candies and syrups
e. Avoid bakery products and food made of refined wheat flour (Maida in India)
f. Preferably avoid grapes, mango and sapodilla (Chickoo) amongst the fruits.
g. Plenty of green leafy vegetables.
h. Plan weight loss if you are overweight. Your maximum body weight should be [(Your height in metre)2 X 23]
i. Fishes and fish oils are good.
j. Lean meat like chicken is also fine. Beef, Ham, Pork. Lamb and Mutton should be avoided.
k. Refrain from aerated drinks.
l. Avoid packed foods and ready to cook foods.
4. Practice stress relieving exercises and yogas. Remain very positive mentally. Remember, a negative thought begets depression. And depression aggravates inflammation and pain.
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