Published in Panorama
It all began the summer of two years when 7-year-old Veronica joined swimming classes in one of the Dubai clubs. She began getting low-grade fever everyday, and then developed rashes on her cheeks. Her parents believed it to be some allergy she’d probably picked up at the pool. Nevertheless she was taken to the physician’s where many tests, including blood test, were done on her. No diagnosis was made. Three physicians were consulted to no avail. Meanwhile, she’d lost appetite and in a span of 3 months she’d pulled down 6 kg. She’d become withdrawn, had mood swings and she tired easily.
By the time correct diagnosis was reached two months later, by a cardiologist-uncle in India, Veronica developed stomach pains, her blood pressure read 130/90, and her kidneys showed high levels of protein. Veronica was suffering from Lupus (SLE) – Systemic Lupus Erythematosus.
“This is typically what happens in Lupus,” explains Dr.Babu Shersad, Consultant Nephrologist, Welcare Hospital Dubai, “it is diagnosed very late, very often, even a year or two after symptoms start appearing. Often it is also mis-diagnosed since many of its symptoms mimic other illnesses and are also vague at times.”
Lupus is a connective tissue disease which affects different parts of the body; it is an autoimmune disease causing inflammation of various parts of the body, especially the skin, joints and kidneys, says Dr.Babu. “Kidneys are one of the first organs to be affected by lupus. For many patients, lupus is a mild disease affecting only a few organs, but for others, it may cause serious and even life-threatening problems. So you have to pick up the diagnosis early and treat it appropriately.”
Who are the people at risk of getting lupus? “For certain reasons females are more commonly affected with it than males, the ratio being as high as 9:1,” says Dr.Babu. “Hormonal factors may explain why lupus occurs more frequently in females than in males. Pre-menopausal women face a greater risk of being affected with Lupus than post menopausal women, though it can occur at any age. In fact my youngest patient is 7 years old!
What are the factors contributing to lupus? Environmental, genetic and hormonal factors may be involved in the disease, according to Dr.Babu. Heredity is certainly a contributory factor. Besides, in very rare instances, we have drug-induced lupus, says Dr.Babu.
Lupus symptoms are often misleading and suggestive of various illness which is one of the main reasons why it is misdiagnosed or diagnosed very late, opines Dr.Babu. “For instance, often, the rashes are dismissed as an allergy or sensitivity to light. The commonest symptom is joint pain and stiffness involving the small joints of the hands and feet. Typically, patients have difficulty in flexing their finds, especially early in the morning. Other symptoms include low-grade fever of about 100 degrees, prolonged and extreme fatigue, skin rashes, butterfly shaped rash across the cheeks and trunk, low blood count and anemia, kidney involvement, chest pain on deep breathing, seizures, hair loss, persistent mouth ulcers which do not heal.”
Then how does one differentiate the pain and stiffness in the hands caused by lupus and that involved in rheumatoid arthritis? “While the pain of rheumatoid arthritis involves only one side of the body, lupus patients have the pain and stiffness in both sides simultaneously,” clarifies Dr.Babu.
How fast does the disease progress and how bad can it be if left untreated? “I would say it’s a very bad disease to have because the morbidity is tremendous,” rues Dr.Babu. “Dealing with a patient who has florid lupus is the most challenging problem because it involves several systems at the same time. Patients can have stroke, paralysis, renal failure, heart conditions, pneumonia, gangrene of the bowel and toes. Many times you have patients with several of these manifestations existing together. It is a disease, if not picked on time and appropriately treated, that can be fatal!”
So how is the diagnosis made? “One of the first things to do is to get a good history and physical examination of the patient and look for all the pointers. This should be followed by lab investigations, particularly of blood,” says Dr.Babu. “The lab investigations form the cornerstone for the disease, not only for the diagnosis but also for follow-up, to see how active the disease is, whether it is quiescent or flaring up. Some specialized tests related to immune status may also be necessary. Besides,a kidney biopsy is required to reflect the exact condition of the kidney, to see the extent of involvement.”
Once diagnosed, the next key is to quantify the severity of the disease because there are several protocols for different activity level of the disease, says Dr. Babu. “For the mild one, probably the supportive measures like blood pressure control, if there is hypertension, medication to balance protein level in the kidney, et al, should be enough.”
“Again, if there is lung involvement and the patient has pneumonia, it is very important to differentiate it from pneumonia due to infection. This is important for deciding on the mode of treatment since you need to give antibiotics, not immuno-suppressors if the pneumonia is due to infection. But pneumonia due to lupus requires suppressing the immune system,” explains Dr.Babu.
Medication depends on the type of lupus and its activity level according to Dr.Babu. “Steroids form part of the treatment but there are a number of newer non-steroidal drugs blupus. If you don’t intervene appropriately at the early stage, then invariably these are the patients who go on to developing kidney failure, 4-5 years down the road.”
What about the side effects of anti-lupus medication? “They can cause a drop in the blood count and dispose you to infections since your immunity level suffers a dip since the drugs are immune-modulating,” clarifies Dr.Babu.
“There is no magic cure for lupus,” emphasizes Dr.Babu. “It takes time and a lot of patience, both on the part of the patient and the treating physician, for there may be ups and downs, periods of set backs, but you have to keep the treatment going. In this context, the three golden rules for treating lupus, are:
1. Over-treatment kills the patient. If for example, you take someone who has very mild lupus and treat him with the powerful medicines, he gets infectious complications to which he succumbs.
2. Under treatment clearly leads to renal failure, dialysis and transplantation. This is probably worse than No.1 because these patients get inadequate therapy. By the time they get diagnosed and treatment, it is already too late and kidney failure is already there!
3. With all the newer modalities of treatment available, it is only safe if the physician is vigilant and monitors the patient closely, looking for every abnormal sign. This is the foremost thing which is crucial to treating lupus.
As long as you follow these rules, says Dr.Babu, “lupus is very much controllable and treatable.
Does it mean that once appropriate measures have been taken and cure is effected there will be no relapse? “Yes, usually the patients are on medication and so it’s fairly well controlled. But they’ll need periodic follow-ups and if there is a relapse, it gets picked up early and treated. Signs of lupus may tend to come and go. There are times when the disease goes into remission. Alternatively it flares up, or becomes active. With good medical care, most people with the disease can lead active, normal productive and fulfilling lives”, reassures Dr. Babu.