My formal diagnosis of Lupus came through in May of 2021, although the manifestations of the disease began much earlier unbeknownst to me. Lupus is an enduring autoimmune disorder that can provoke inflammation and distress across various body regions. Typically, your immune system battles infection. In autoimmune diseases such as lupus, however, your immune response mistakenly targets healthy tissue, including your skin, joints, muscles, and organs. As of now, lupus is incurable, with treatments focusing on symptom management, reduced organ damage, and slowing the progression of the disease.¹
Around two years preceding my diagnosis, lupus indicators started to appear. In 2019, routine tests highlighted a diminished white cell tally, signaling potential immune system disorders that could hinder the body’s infectious disease defenses.² I consulted with a hematologist regarding these irregular results, but was reassured there was no cause for concern.
Additional peculiar indications arose in early 2021. Severe fatigue set in with minimal exertion, my hair began to shed excessively, and pronounced soreness afflicted my limbs, especially after sun exposure. Describing these concerns to my physician led to further testing, which suggested an autoimmune condition and resulted in my referral to a rheumatologist.
To my surprise, the diagnosis process was fairly straightforward. Upon evaluating my symptoms and lab data, the rheumatologist posited I had lupus. Though my journey through various rare conditions had been long, a three-year path to a lupus diagnosis seemed relatively swift. Little did I grasp, the diagnosis would be the simpler segment of my lupus saga. I was unaware of the trials ahead in finding a treatment my system could endure.
The inaugural prescription was an antimalarial drug. Typically, these medications address malaria but they can also ameliorate lupus by mitigating pain, reducing inflammation, preventing lupus flare-ups, and minimizing dosage of other lupus treatments that carry more risks, like steroids.³ My specialist referred to this medicine as strategically simple and recommended I eschew delving into the extensive list of potential adverse effects.
I disregarded this suggestion, discovering that long-term visual impairment was among the daunting risks of this antimalarial. Nevertheless, I accepted the risks, hopeful of its potential to stabilize my immune response over time. Antimalarials require an accumulation period within the body, often taking several months to manifest efficacy.
Within a week of commencing this drug, its unsuitability with my physique became glaringly clear. I was afflicted by intense panic, sleeplessness, and diminished hunger. My doctor and I opted to slash the dose and incrementally elevate it weekly, permitting my system gradual adaptation. Fortuitously, this strategy was successful, and I could maintain the standard dosage. I believed I had reached a smooth cruising altitude, but I was mistaken.
By the fourth month of taking the antimalarial, I experienced a 75% return to my previous state. My vigor had improved, no longer requiring midday rests to persist through my job, and I regained capability for physical activity. Yet, despite seeming advancement, I began to suffer sharper flares of lupus symptoms springing forth unexpectedly. Even high doses of ibuprofen barely alleviated my muscle agony, and extensive rest failed to conquer my exhaustion.
Ordinarily, I would endure these occurrences for about five days before reaching out to my rheumatologist. Each instance prompted a brief steroid regimen from my doctor, which typically resolved issues within a week.
These steroids proved miraculously potent at quelling my bodily inflammation, so it was decided that I would maintain them in conjunction with the antimalarial. The steroids provided me increasingly longer spans of well-being and reduced flare-ups. Nonetheless, they also brought unwanted repercussions, most notably weight gain. I gained 12lbs in four months. My wardrobe no longer fitted, and my hunger seemed boundless. Yet, I reassured myself that these sacrifices were for the greater good of my health.
Awareness dawned that steroids pose several health threats when used for extended durations, including heightened blood pressure, serious eye disorders, and bone demineralization.⁴ My physician recommended integrating an alternative, less detrimental medication into my plan to reduce reliance on steroids.
My subsequent trial involved monoclonal antibodies, which bolster infection defense but are not without side effects such as immune suppression, headaches, and queasiness.⁵
Contrasting with steroids and antimalarials, which are ingestible, monoclonal antibodies necessitate a monthly two-hour session at an infusion center. Their success could entail lifelong usage, or they may lead me down a path of further experimentation.
Confronting lupus treatment often equates to choosing between the lesser of two setbacks: bouts of flare-ups or adverse drug reactions. Armed with my current understanding, I would have approached this ordeal with elevated patience and far more tempered expectations. I am now cognizant that contending with a condition like lupus entails immense uncertainty demanding considerable resilience, acceptance, and grace.
Sources:
- Stat Pearls. Systemic Lupus Erythematosus.
- MedlinePlus. White Blood Cell Count (CBC).
- UptoDate. Antimalarial Drugs: An Overview.
- MedlinePlus. Prednisone.
- Ponticelli C, Moroni G. Monoclonal Antibodies for Systemic Lupus Erythematosus (SLE). Pharmaceuticals (Basel). 2010;3(1):300-322. Published 2010 Jan 20. doi:10.3390/ph3010300