What It’s Like Living with Lupus

For reasons that may involve hormones and sex chromosomes, women are affected by lupus nine times more often than men.

Lupus diagnosisPhoto: Shutterstock

Latin for “wolf,” lupus allegedly takes its name from skin lesions that once reminded people of wolf bites. It’s a systemic autoimmune disease: “systemic” because it can affect any or all of the body and “autoimmune” because it’s caused by an overzealous immune system targeting normal, healthy tissues.

Lupus’s widely varied effects depend upon the immune system’s targets. One of its most distinctive indicators is a butterfly-shaped rash that covers the cheeks and the bridge of the nose, but this happens in only about a third of sufferers. Other signs can include disc-shaped skin lesions, sores in the mouth or nose, fever, fatigue, arthritis, muscle pain, shortness of breath and dry eyes. Most people see their symptoms come and go in periods of active disease (“flares”) and remissions.

A predisposition for lupus runs in families, although it often seems to take external factors to bring on the disease and set off flares. These triggers range from ultraviolet rays to stress to infections (such as shingles or the common cold) to certain prescriptions (like sulpha antibiotics). Some cases, known as “drug-induced lupus,” clear up once you stop the medication. Most other cases must be managed over a lifetime. For reasons that may involve hormones and sex chromosomes, women are affected nine times more often than men.

If you’ve been diagnosed with lupus, try to lower your exposure to your triggers. When flares do arise, drugs such as NSAIDs and corticosteroids can control them, which is paramount for preventing inflammation caused by the immune system from permanently scarring organs such as your kidneys, lungs or heart. “Active lupus is like the winds of a tropical storm,” says Dr. David Isenberg, the senior author of the lupus-­management guidelines published by the British Society for Rheumatology. “We need to calm them quickly to minimize the chances they’ll cause damage that can’t easily be undone.”

That said, drugs can bring adverse effects of their own—digestive problems from long-term NSAID use, osteoporosis from steroids—so your rheumatologist will need to tailor a regimen with a good protection­-to-harm ratio. They should also schedule regular checkups so that any complications that do arise can be treated promptly. Lupus needs to be taken seriously, but with regular monitoring, adherence to your prescriptions, emotional support and a healthy lifestyle, the odds of surviving it are in your favour.

Learn how to spot the telltale lupus symptoms.

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Originally Published in Reader's Digest Canada