Sylvia Higgins Memorial Essay - General Category Winner, 2006
W. Gibb was a Grade XII student when he wrote this essay about his mother's arduous journey with Drug-induced Lupus, and the effect it had on their whole family.
Lupus Erythematosus: An Essay On Drug-Induced Lupus
This is my personal story of Lupus, a disease that I have never myself acquired, but that has, nonetheless, managed to make its mark in my life and teach me a life lesson that I shall not soon forget.
We have no history of Lupus in our family. Our family came from generations that lived to a very old age, with no ailment of the dreaded autoimmune disease we know as Lupus. Nor did our family's ancestry have any known history of Arthritis or Rheumatism. Until four years ago, I had never heard of Lupus.
All this changed when my 38-year-old mother began to constantly feel ill. My mother was typically a very healthy and active person who had "high energy", and was definitely not one prone to complaining about ailments. It was rather unusual when my mother started having bouts of "the flu", especially when no one else in the family had been sick, and no one else caught this supposed "flu". These bouts would occur often in the morning, and again in the evening. Debilitating aching joints, tiredness, body fatigue, muscle pain, were all symptoms she suddenly seemed to acquire. After a few weeks of continuous bouts, my mother saw her doctor. ANA (antinuclear antibody) tests were positive, but no doctor seemed to understand this sudden onset of "acute arthritis" in her joints, especially in such a young and healthy person with no family history of arthritis. Nor could anyone explain the seemingly constant tiredness and achiness that accompanied her joint pain. My mother was referred to a rheumatologist, and, in the mean time, given ibuprofen to alleviate the symptoms. The painkillers did not seem to work, and my normally happy mother became anxiety ridden over her illness and seemed to be chronically in bed, resting. Gone was the dynamic and energetic mother who could easily balance four children, two part time jobs, six people's schedules, and her own activities, at the same time. Our mother could now barely get off the couch to prepare a meal, let alone care for her family.
The chief complaint, aside from acute and terrible pain in her joints, began with a muscle pain in her calves, and continued on to a constant dull ache in the muscles of her upper arms. It was bilateral pain, switching from one side to the other without reason. It felt, she said, as if she had just received an immunization needle and had a sore arm as a result. On other occasions, she would wake up with the muscles in her neck stiff and practically paralyzed, unable to turn her head from side to side without extreme pain. This may have been from the stress of worry (muscle tension), however, it was all part and parcel of the disease and its complications.
This malaise of my mother, and the upset to our family's routine, continued on for another six months. No amount of doctor's visits seemed to pinpoint the exact cause or cure for my mother's worsening situation. At some point during this time, our family went on holidays. What raised new concerns was that while we were on vacation, my mother's symptoms seemed to dissipate and disappear completely, only to resume upon her return home. This prompted questions from her family, as well as her doctor, that perhaps her illness was "in her mind".
Whether at rest or during exercise, the symptoms of muscle ache, muscle stiffness, flu-like symptoms, and joint pain persisted daily. There was no redness or inflammation of the joints, no rash - just pain and fatigue. My mother continued to worry, and, as the doctors could not help her, decided to investigate the matter herself through the Internet. This of course, brought on even more anxiety when reading about all the possible fatal diseases that were probable with this vast array of symptoms. It was only when she clicked on one website -- that of the Lupus Erythematosus Society -- that she found her answers. By chance, she happened upon an article regarding Drug-induced Lupus -- and one of the main culprits of the disease -- the drug, Minocin. Bingo.
Two years prior to this, my mother's dermatologist had prescribed her the drug, Minocin, for some persistent acne. The prescribed course of Minocin seemed to clear the acne well, but the acne would always return some weeks after the drug was stopped. The doctor advised my mother to take short courses of Minocin whenever her acne flared up -- and my mother followed this ill-fated advice. Going against the common practice of taking antibiotics responsibly and regularly each day, as well as finishing all courses of medication, my mother took her medication "prn", or, "as needed". This involved frequent starts and stops, irregular dosages, and long-term, random, inconsistent, and indiscriminate usage. In later months, my mother would comment on the cause of her Drug-induced Lupus, noting that "her body revolted in protest to this erratic and disproportionate medicinal treatment that she was forcing into it. It was an "on-again-off-again" dangerous practice that went against all conventional standards and teachings of safely administering medications."
Of course, the immediate action was to stop the drug, Minocin. Doctors and specialists confirmed that this was, no doubt, the origin of her symptoms, and that she did, unfortunately, have Drug-induced Lupus. The reason her symptoms were so apparent first thing in the morning and again in the evening was that she took the drug at those times. The mystery of why my mother seemed to have no symptoms over the course of a vacation was clear -- she did not take her Minocin along with her on holidays.
Drug-induced Lupus was the diagnosis, and the prognosis was questionable. Drug-induced Lupus can take up to three years to reverse. In some cases, the disease may never resolve itself and the patient can continue to have symptoms for an undetermined length of time, perhaps always. ANA tests over the years may continually jump up and down, being positive or negative on different occasions.
Painkillers for muscle and joint pain had little effect on my mother's pain, which became excruciating in the throws of the disease before the diagnosis was made. A doctor finally suggested taking a low dose of the antidepressant, Amitriptyline (Elavil). Low doses of this medication work by increasing the pain threshold of the patient, thereby decreasing the amount of pain they actually feel. Once my mother had confirmed that she was not being tricked into taking antidepressants for depression, (25 mg. is hardly a therapeutic dose for depression), she started on Elavil and was pain free in three weeks time (the amount of time required to "build up" the drug for effectiveness).
Although exercise does not "cure" Drug-induced Lupus (or Lupus, for that matter), taking up daily exercise during this stressful time in her life seemed to certainly help my mother mentally in re-establishing her energy. Exercise, she believed, also helped in alleviating her symptoms of pain, or perhaps it just took my mother's mind off her illness, and thereby helped her not to feel the pain to the full extent. The rush of adrenaline during exercise temporarily numbs the sensation of pain, which was very beneficial to my mother's mindset, attitude, and thus, her whole disposition and outlook on life. In fact, a benefit of this terrible ordeal of Drug-induced Lupus was the initiation of my mother into a regular exercise program -- an exercise program that she still continues to this date, even more actively now than ever. Through this adversity, my mother has come to fully espouse the the virtues of exercise in both the healthy and the sick. "It is especially important, both physically and mentally," my mother says, "for those who are ill to exercise in any way they can, in order to restore the energy, power, and optimism, that the illness has taken from them."
It is through this encounter with Lupus that I have come to realize how medications of all types should be taken with great care and responsibility. As wonderful as our researchers have done to provide us with these miracle drugs, these same drugs can be dangerous and cause damaging results when not used properly or as intended. To take a drug "willy-nilly" without thought or regularity, and to abuse any type of medication is to open the door to unforeseen, dangerous, and possibly life-threatening complications.
After four years, my mother still has occasional recurring symptoms of the muscle ache in her arms, particularly when under extreme stress. These are few and far between, however. The ANA tests still jump between positive and negative. At some point, when my mother has obtained three consecutive negative ANA results, she will discontinue her use of Elavil. Exercise has helped her considerably -- not to eliminate the condition, but, instead, to sustain a positive outlook on life, keep fit and healthy, and not dwell on her disease. As an additional side effect, my mother notes that she now has to be careful with other drugs that are prone to cause Drug-induced Lupus, as the same undesirable symptoms can return very quickly with drugs having the Lupus potential.
While this is a condition that I wish no one would have to live with, it is a reminder to all of us to take our prescribed medication seriously, carefully, in regulated dosages, for the recommended prescribed length of time. One should know all the possible side effects of a pharmaceutical product, especially when these drugs are taken long term. Through my mother's experience of Drug-induced Lupus, I have learned about Lupus and the damage it can do to the lives of the individuals it attacks and the additional stress to their families. I hope that with this knowledge I can not only educate others around me of the dangers of abusing prescriptions, but also give comfort to those who have Lupus, whether drug-induced or not, that there is support, education, relief, and help for those who have this disease.
The disease of Lupus has taught me a valuable lesson regarding the care we take with our bodies and what we ingest into our bodies. I hope this essay will encourage others to be responsible in their lifestyle and habits -- such as exercising regularly, and taking only controlled medication with the supervision of a doctor under the proper conditions and for the right reasons. It is important to know that Lupus can affect anyone - even those without a history -- and we should all take care to prevent this debilitating disease from attacking ourselves and those in the community. We are all at risk.