The Disease With a Thousand Different Faces

By Dr. W. Gifford Jones

December 1, 2004

Why would I want to use a medical story from a publication that reaches only 550 people? Particularly when I have access to international medical journals that reach thousands of doctors. Simply because it's about a disease that affects many Canadians. Ones that are told they need a psychiatrist when they actually need other medical care. And since it's Lupus Month in Canada there's no better time to tell this story.

One Christmas morning this woman found that her hand had mysteriously become so swollen she could not grasp even a small object. She was also tired an achy which she attributed to the hectic rush of the season. So instead of being with her family she spent the next seven days in hospital receiving prednisone to decrease the swelling. Little did she know it was the beginning of an eight year battle with lupus.

But what happened to this patients repeats itself time and again. In the ensuing months and years she experienced rashes, breathing problems , upset stomachs and intermittent swelling of the joints. Her family doctor believed her symptoms were due to stress and later on a rheumatologist diagnosed the problem as arthritis and prescribed anti-inflammatory drugs.

But her condition worsened. Her lungs swelled making it hard to breath. Her kidneys became inflamed, she passed blood in her urine and stools and there was overwhelming fatigue. Over the next two years she received 20 different medications for pain, inflammation and other physical problems. Finally another rheumatologist diagnosed lupus. It's amazing that normally it takes doctors from 7 to 10 years to diagnose lupus.

So why should it take so long for a diagnosis. Sometimes spotting lupus is easy if there's the classic butterfly-shaped rash over the bridge of the nose. But unfortunately lupus is the "great imitator" and can make it's presence known in so many different ways that it frequently fools doctors.

Patients lupus patients hear the phrase, "But you don't look sick". It makes lupus patients cringe because the speaker is really saying ,"You can't be sick if you look so well."

Lupus patients say that their tired feeling is like comparing a hang nail to a broken arm. That they have full body exhaustion and that lifting their arms to wash their hair is like hefting a 200 pound barbell.

Dr. Murray Urowitz, a world authority on Lupus at Toronto's Western Hospital, says lupus patients may have fever, weight loss, loss of hair, stiffness and swelling of joints canker sores in the mouth, hives, persistent unusual headache, nausea and vomiting, coughing up blood and recurring or persistent abdominal pain.

So how can one disease result in so many symptoms? Dr. Urowitz says that patients with lupus produce a number of antibodies.

These proteins produced by our bodies normally protect us from infection and other problems. But, like a friendly dog that suddenly turns on its master, wild antibodies roam the body causing havoc with joints and other organs.

Blood tests are used to diagnose lupus. One test detects lupus in 98% of cases, but the antibody is also found in 10 to 20% of patients without lupus.

BLESSING AND CURSE

Several drugs are used to treat lupus. Prednisone has been the most important medication to ease pain and increase longevity.

But it's both a blessing and a curse as it also increases blood pressure, causes weight gain and sometimes diabetes. So doctors try to use prednisone in low doses and for a short time.

Dr. Urowitz reports that he prescribes Plaquenil, an antimalarial drug, to many of his patients which helps to prevent recurrences of symptoms and also lowers blood cholesterol.

Lupus remains a serious disease, but there has been great progress. For instance, in the 1970s, only 50% of patients with lupus were alive five years after their diagnosis. Now 80 to 85% are alive fifteen years later.

Since lupus awareness is growing, I hope this column will result in more lupus patients being treated by a doctor rather than sent to psychiatrists.

W. Gifford-Jones M.D is the pen name of Dr. Ken Walker graduate of Harvard. Dr. Walker's website is: Docgiff.com

My book, �90 + How I Got There� can be obtained by sending $19.95 to:

Giff Holdings, 525 Balliol St, Unit # 6,Toronto, Ontario, M4S 1E1

Pre-2008 articles by Gifford Jones

Canada Free Press, CFP Editor Judi McLeod