Lupus – The Great Imitator

Unfamiliar to many, yet affecting many, lupus is hardly a rare disease. but with breaking news that pop star Lady Gaga tested 'borderline positive' for lupus, it is hopeful that public awareness will increase.

Lupus is not so rare that you only read about it in textbooks, but it was not until my clinical pharmacy days at Stanford that I fully grasped what lupus was. Lupus sufferers must endure some of the toughest health challenges, from chronic pain to debilitating kidney disease. however, depending on the severity of the disease, lupus can be controlled with proper treatment, and does not have to shave years off a person's life.

Unfortunately, lupus has no cure, so it is a life-long battle full of ups and downs. When lupus takes hold, the immune system begins to malfunction. Think of it like 'friend becomes foe' where the immune system turns its back on the body, instead of defending it. The immune system of a lupus sufferer cannot tell the difference between the peaceful dwellers (the body's organs) and the foreign invaders (disease-causing viruses and bacteria). This creates a situation where the innately protective immune mechanism goes haywire and begins attacking healthy tissues in the body, such as the skin, joints, blood vessels and kidneys.

Lupus patients face a lot of uncertainty because they suffer unpredictable bouts of the disease - a flare - followed by periods of remission. What is even more frustrating about lupus is that it does not get diagnosed overnight. This is not just because patients must wait for test results, but also because of the nature of the disease. It may take months, or even years, before enough symptoms show up for the doctor to pinpoint the diagnosis. I like to describe lupus symptoms in three words - vague, variable and vast. Symptoms of lupus usually evolve slowly, come and go, and mimic many other diseases. furthermore, lupus has such a mind of its own that initial blood tests may be positive then turn negative, and vice-versa. Another troubling side of lupus is that it is widespread, and has the potential to affect almost every single organ in the body.

It could not be stressed enough that the key to living with lupus is getting the right care. A few years ago, I was consulting a young woman on her lupus medications. during the consultation, I discovered that she had just got over her tenth miscarriage. She revealed to me that she had stopped taking her medications, because she felt that she didn't need them anymore. with proper education and careful monitoring by her doctors, her lupus fell into remission, and before she knew it, a healthy baby was born. The take home message is: Control lupus before it controls you. Uncontrolled lupus increases the risk of complications during pregnancy, such as stillbirth, miscarriages and premature delivery. Lupus can also lead to non-pregnancy complications, such as kidney, heart and lung problems. While it is true that lupus medications can create bothersome symptoms, they are life-savers, so do not stop or change any treatment without your physician's approval. Lupus sufferers should remember that minimizing flare-ups and preventing organ damage are essential factors in keeping lupus in check, so make sure to stick to your doctor appointments, take all the prescribed medications, avoid smoking, minimize sun or UV radiation, stay active, and have a good attitude.

Given its complexity, the outlook of lupus is promising. The majority of people with lupus today can live a normal lifespan, but 20 years ago or so, the outlook was bleak. thanks to better diagnostic tools, increased awareness and effective medicines, quality of life for lupus patients has dramatically improved. For more information on lupus, visit the Emirates Arthritis Foundation website. arthritis.ae

There are only several doctors (rheumatologists) in Jordan who specialize in treating lupus, so I was privileged to sit down with Dr Jamal Steitieh at his clinic in Amman. Hopefully, his answers to these commonly-asked questions will give every woman additional insight into this complicated disease.

U: What do you tell worried patients who first get diagnosed with lupus?
Dr S: I tell them that not every patient with lupus is the same - some patients with lupus die in 6 months, but most patients life a long life with proper care and medications, of course. if the person has joint pain, fever and skin rashes without affecting major organs, such as the brain, heart, kidneys and blood vessels, then the lupus is mild.

U: What resources can patients turn to if they think they have lupus?
Dr S: if patients reach rheumatologists, they are in safe hands. The master of management of lupus, in general, is the rheumatologist.

U: What advice can you give to lupus sufferers to increase their chance of living a normal lifespan?
Dr S: they should comply with clinic visits and mediations, and get social support. From my perspective, a married lady who doesn't receive social support from her husband may get frustrated, not take her medications and not see her doctor regularly. A socially stable woman will most likely have her lupus under control, and her life expectancy and quality of life will be better.

U: What do you tell patients who don't want to take their medications because they are worried about side effects?
Dr S: The benefits of medications, while monitoring for side effects by getting regular blood tests, is much more important in controlling lupus than having a very remote possibility of getting cancer in ten years. I explain to my patients that drug manufacturers must list everything (side effects) for medical legal reasons, to protect from lawsuits.

U: What precautionary measures should patients take if they are diagnosed with lupus?
Dr S: Ladies who are married at child-bearing age should get contraception, because pregnancy should only happen when lupus is under control. Pregnancies should be planned. I also recommend patients to avoid exposure to sunlight and wear sun block, especially if they have photosensitive symptoms of lupus, such as skin rashes.

U: Is lupus genetic?
Dr S: I tell patients that lupus is not a hereditary disease, but it may run in families.

U: What is the youngest age you have diagnosed lupus?
Dr S: I diagnosed a six-year-old boy, here in Jordan with lupus. and while I was in Saudi Arabia ten years ago, there was an eight-year-old girl who had lupus, along with lupus-induced kidney disease.

U: What is the relationship between stress and lupus?
Dr S: From my observations, the relationship between stress and lupus is not that much; stress may amplify symptoms of aches and fatigue in lupus, but doesn't trigger flare-ups. however, infection can precipitate lupus.

Fast Facts
• Lupus is not cancer.
• Lupus is not contagious.
• at least 5 million people are affected worldwide.
• Cause of lupus includes environmental factors and family history.
• ninety percent of cases are women of child bearing age (15 to 45 years old), but it can strike anyone, of any gender or age.
• without proper care and treatment, lupus can be fatal.
• Typical symptoms include: extreme fatigue, fever and headaches; painful or swollen joints; skin problems, including typical butterfly-shaped rash across cheeks and nose; sun-or light-sensitivity; mouth or nose ulcers; pain in chest on deep breathing; swelling in the extremities and around the eyes; hair loss and anemia.

Lupus - The Great Imitator