One morning about 10 years ago, I awoke with a head-to-toe rash that resembled multiple mosquito bites. Otherwise, I didn't feel or look ill. A dermatologist said I had dermatitis and prescribed a steroid. But the rash didn't improve much and was soon joined by another symptom: a bad-sunburn sensation that enveloped my entire body. Moisture (warm or cool) from sitting in a bathtub or wet sauna helped ease the soreness. An internal medicine physician ruled out infectious diseases. Finally, after 6 months, a rheumatologist diagnosed systemic lupus erythematosus, an autoimmune disorder, based on my signs and symptoms and the presence of serum antibodies.
Over the years, lupus has attacked my body in various creative ways. Damage to my inner ear caused a Meniere's disease-type condition that included incapacitating vertigo. Endolymphatic sac decompression stopped the vertigo, but I still experience tinnitus, pressure, and hearing loss. Recently, brainstem vasculitis caused acute binocular diplopia that lasted 5 weeks, resolving only after aggressive therapy. My neurologist says the eye symptoms mimicked ocular myasthenia gravis.
As my case illustrates, lupus can take a long time to diagnose and cause wide-ranging physical problems, which is why it's known as "the great imitator" of other diseases. Patients like me often become frustrated when the healthcare team can't put the pieces of the puzzle together.
I hope the article I've coauthored in this issue will help you recognize the many faces of lupus and clear up any misconceptions you may have about it. (See "Putting a Face on Systemic Lupus Erythematosus," page 22.) I've been surprised at how many patients and even some healthcare professionals get a little nervous when I use the term "immune system" when I'm explaining lupus to them. Some think that lupus is like HIV infection. I explain that lupus means that the immune system is overactive, while in HIV it's underactive.
I teach my students to look at the big picture when they care for a patient with lupus. This includes actively listening to his story, assessing skin lesions and other signs and symptoms, and correlating this information with laboratory indicators. Educate your patient about treatment options and encourage him to take an active role in his treatment plan. After all, he's the one living with lupus every day.
I cope with the disease very well. Sometimes it does get a little old, especially when my skin is so sore most of the time. But I have no fatigue and very little keeps me from enjoying my life to the fullest. Yes, lupus is a formidable enemy, but as a nurse, you can help your patient keep it at bay and live a nearly normal life.
Richard L. Pullen, Jr., RN, EdD
Professor of Nursing, Amarillo College, Amarillo, Tex.