The word Lupus is a Latin word meaning “wolf”. This word was coined because the rash in a patient with Lupus resembles the bite of the Wolf! Lupus is a Chronic Auto-Immune Disease where the body’s autoimmune system instead of serving its normal protective function, forms antibodies which start attacking healthy tissues and cause inflammation.
In an interview with People in 2019, Selena Gomez mentioned, "I’ve discovered that anxiety, panic attacks and depression can be side effects of lupus, which can present their challenges. It's an everyday struggle."
Knowing the early warning signals is crucial for patients to start treating the disease as soon as possible, much like with many other life-threatening conditions.
An autoimmune condition known as Lupus develops when the body's immune system assaults its cells and organs.
Dr Kaushik Bhojani, Head of Rheumatology Services, Fortis Hospitals shares more about Lupus, the lurking wolf of autoimmune disease.
"Normally these antibodies are meant to fight outside infections such as bacteria and viruses. However, in Lupus, the body loses its ability to differentiate between these foreign invaders (antigens) and our normal healthy tissues. Hence the body’s immune system begins to fight against its own 'self'," says Dr Kaushik.
The antibodies then combine with the self-antigens and form immune complexes within tissues which cause inflammation within the organs. This can sometimes cause major health issues and can even be life-threatening!
"Quite often, in our country, this disease is diagnosed late because the patient reaches the Rheumatologist late. By this time, the inflammation has spread to involve multiple organs and then the disease becomes life-threatening. Young lives have often been lost by the time this disease is diagnosed," comments Dr Kaushik.
The causes of Lupus are many, and sometimes quite obscure. Lupus occurs in a genetically susceptible person who is exposed to a trigger; some well-known triggers are:
- Sunlight and ultraviolet exposure
- Bacterial or viral infections
- Hormonal treatments containing Estrogens can trigger a flare
- Some drugs can also trigger a flare
- In diagnosed cases, overexertion, stress, and emotional upheaval is known to cause flares
- Pregnancy can trigger a flare of lupus and hence patients having Lupus must plan their pregnancy only when the disease is well controlled and consult their Rheumatologist who will do a detailed workup before the couple plans their pregnancy.
However, most often, one is not able to identify a cause for the trigger.
A key symptom is a skin rash involving the face, particularly the cheek bones - known as ‘Malar Rash’. This is usually in the shape of butterfly wings and hence is also called a ‘butterfly rash’. Other symptoms include:
- Sun sensitivity
- Painful swollen joints
- Frequent mouth ulcers
- Excessive hair loss
- Persistent Anemia
- Prolonged fever and no clear evidence of infection anywhere
- Fingers turning white or bluish on exposure to cold
- Excessive fatigue
- Kidney affection in the young without apparent cause-such as swelling in legs, frothy urine
- Chest pain and breathlessness on exertion
When there is a combination of more than one symptom present, it is easier to suspect this illness.
Usually, it is common for a patient to consult his or her family physician in case of fever, generalized body ache etc. And if the onset of illness is with joint pains, usually a patient first consults a nearby Orthopedic surgeon. However, if the patient has a ‘Plus Syndrome’, meaning that symptoms are affecting different aspects of the patient’s body, then the patient must not lose time.
"If the patient has joint pains and hair loss or the patient has a low-grade fever and joint pains or for that matter a skin rash along with hair loss and joint pains, then it is important to realize that this is not an ordinary illness and needs a specialist consult," highlights Dr Kaushik.
Management of Lupus involves three major aspects:
a) Arriving at the diagnosis correctly and quickly. Some autoimmune diseases can look similar and a correct diagnosis is essential. A detailed history, with a thorough clinical evaluation, is non-negotiable. This is followed by laboratory tests to confirm the diagnosis. The tests range from routine haematology tests to Immunological tests like an Antinuclear Antibody test (ANA). This ANA is followed by in-depth Immunological testing along with tests for internal organ affection basis clinical signs.
b) Assessing the degree of involvement: A detailed clinical evaluation from head to toe is important because lupus can involve one or many organs. The treatment will depend on the extent of the Lupus and the intensity of organ inflammation.
c) Monitoring of disease control: At each visit, answering a detailed questionnaire, and evaluation, along with lab testing for assessing internal organ function, is required to keep this disease well under control.
Basis the above three parameters, the treatment and intensity of treatment are to be determined. However, it is very important to remember that there is no permanent cure for Lupus, and treatment will need to be continued indefinitely even after the patient feels that he/she is well.
Measures include:
a) The patient must avoid going out in the sun between 9.00 AM to 5.30PM
b) If unavoidable, then covering up well using long-sleeved dresses, and using caps and sunglasses are essential. In addition, the use of sunscreens with a high SPF of greater than 40 is essential
c) Avoid going for picnics at beaches or riversides because the sun rays reflected from the water are even more dangerous triggers. Going swimming in the sunlight is simply out of the question
d) Avoidance of hormonal pills containing estrogen is necessary, Hence even for contraception, only Progesterone pills are safer.
e) When consulting other doctors, they must be informed hand that you have Lupus and you must contact your rheumatologist to ensure that there is no risk with the treatment prescribed by them
f) Before undergoing any planned surgery, you must consult your rheumatologist and preferably have your surgeon talk to your Rheumatologist
g) Importantly, pregnancy planning must be avoided in active disease.
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