Chapter 1: A Misdiagnosis and Unexpected Consequences

It’s surprising to think that a medication intended to enhance your quality of life could lead to a new set of complications. Unfortunately, that was my reality. Instead of alleviating my ulcerative colitis, I developed a condition I had never heard of before: drug-induced lupus.

To provide some context, I was mistakenly diagnosed with irritable bowel syndrome (IBS) at the tender age of 12. By the time I turned 20, my symptoms had escalated dramatically, causing significant internal distress. Even when I began to notice blood in my stool, the IBS diagnosis remained unchanged. At 22, during a visit to a gastroenterologist for unrelated acid reflux issues, I disclosed my IBS symptoms. The reactions from both the nurse and doctor were striking; they were visibly shocked and informed me, "That doesn’t occur with IBS." It became evident that I had never undergone any tests beyond a physical examination.

After a stool test revealed inflammation—another indication that IBS was not the culprit—I underwent a colonoscopy. The diagnosis of ulcerative colitis was confirmed. This revelation brought a mix of emotions; I was relieved to finally understand my condition, but also frightened by the fact that this autoimmune disease could not be cured and would require lifelong management.

Shortly after my diagnosis, I experienced the most severe flare-up I had ever faced. The pain was unbearable, my fever hovered around 103°F, and I became anemic and weak, necessitating hospitalization. Given the years of untreated symptoms, my condition was dire, and the standard medications were ineffective. Thus, discussions about biologic treatments began.

Initially, Avsola seemed like a miracle solution. Over the months of IV treatment, my ulcerative colitis symptoms gradually improved, eventually reaching a state that could be classified as remission. However, while my digestive health improved, my joint pain intensified. It began with my toes, which became swollen and red, followed by aching feet and painful knees. Soon, I was experiencing stiffness every morning, and the discomfort spread to every joint in my body throughout the day. I found it necessary to use a cane for support while walking and eventually stopped going out alone.

This situation was alarming. As my ulcerative colitis improved, my joint issues worsened, and I was troubled by the fact that my white blood cells remained active despite treatment. The joint pain did not seem linked to ulcerative colitis; it had to stem from a separate issue, likely arthritis. Consequently, my primary care physician referred me to a rheumatologist.

My rheumatologist conducted a series of tests, hoping to identify the underlying cause. While my rheumatoid factor was zero and the x-rays were clear, one concerning result emerged: my ANA levels were positive. Elevated ANA levels typically indicate lupus, but additional tests failed to confirm this diagnosis. Ultimately, the conclusion drawn was drug-induced lupus.

The duration of drug-induced lupus can vary widely, influenced by the specific medication, the length of treatment, and individual body chemistry. As of now, it has been about 10 months since my last dose of Avsola, and I am still grappling with the effects of drug-induced lupus.

A month post-Avsola, I faced another significant flare of ulcerative colitis, forcing me to manage both conditions simultaneously. Following another hospital stay and a switch to a different biologic medication called Stelara, my ulcerative colitis has stabilized. Although inflammation persists, it is no longer classified as an active flare, and adjustments to my medication are likely in the future.

While my ulcerative colitis remains the priority, the management of drug-induced lupus has become a waiting game, biding my time until the right moment for treatment. In the interim, I was prescribed Plaquenil, another immunosuppressant primarily used for lupus and rheumatoid arthritis. Initially, it seemed effective, but its benefits diminished rapidly. Recently, I revisited my rheumatologist to explore further options.

After reviewing my test results, he presented two pathways: addressing either the pain or the inflammation. Although I was inclined to tackle the pain first, I opted to seek a treatment for inflammation, hoping it would alleviate the underlying source of my discomfort. In hindsight, I wish I had prioritized pain management. The medication prescribed for inflammation, Methotrexate, is not to be taken lightly. In low doses, it assists lupus and rheumatoid arthritis patients; in higher doses, it is used in chemotherapy. I'm required to take it weekly and must wash my hands after handling it due to its potential absorption through the skin. Like many chemotherapy agents, it can induce nausea and other side effects. I am currently a month into this regimen, but it may take six weeks or longer to see any improvements, if it proves effective at all. One of my greatest fears regarding medication is not the side effects, but the possibility that they will yield no results while still causing adverse effects.

Originally, my intention was to share my personal experience with this condition, but I decided to broaden my perspective by interviewing others who have faced similar challenges. Through a study on Prolific, I found three participants willing to share their experiences anonymously. Below are their responses:

Q: "What drug did you take that caused the lupus?"

1. "Hydralazine."
2. "Procainamide."
3. "Procainamide."

Q: "How did you discover you had drug-induced lupus, and how long did it take to diagnose?"

1. "6 months."
2. "Approximately 8 weeks; my GP conducted blood tests after I reported new symptoms."
3. "My consultant diagnosed me; it took about 14 months."

Q: "What was the duration of your drug-induced lupus?"

1. "For 1 year and a half."
2. "10 weeks."
3. "About 18 months."

Q: "How has this illness affected you physically, and how have these changes impacted your life?"

1. "It disrupted everything I used to do. I felt constantly fatigued with mood swings, very tired, and in pain throughout my joints."
2. "I experienced significant fatigue that took months to alleviate, along with persistent pain and rashes that took time to heal. This was disruptive and caused me to take time off work. I was worried about my health, which negatively impacted my mental well-being and limited my physical activities."
3. "Fatigue, pain, stiffness, and inflammation in my joints made daily tasks more challenging."

Q: "How has this illness affected you mentally, and how have these changes disrupted your life?"

1. "It was incredibly difficult. My mental health plummeted, and I felt worthless and depressed."
2. "Initially, I felt a lot of anxiety due to my uncertainty about my condition, which only intensified upon receiving a diagnosis I knew little about. This affected my family life and led to ongoing health anxiety when it came to taking prescriptions."
3. "Depression."

These individuals shared experiences that resonate with my own, underscoring the profound impact of this so-called "side effect."

At times, it feels overwhelming not knowing when this ordeal will end. Each day brings uncertainty about whether I will manage to accomplish tasks around the house or remain in bed. The constant need to keep track of medical appointments has turned my entire focus toward my health, weighing heavily on both my physical and mental well-being.

Nonetheless, since my ulcerative colitis diagnosis, I have faced struggles but have also demonstrated resilience. It’s important to acknowledge the harshness of my situation; I won’t pretend that it’s easy. Over this journey, I have experienced both progress and setbacks. I have learned the value of acceptance—acceptance of my circumstances, my body, and the determination to make the best of what I have. Yes, there are days when I can only lay in bed and watch videos due to fatigue, but there are also days when I can engage in activities like writing, watering plants, or preparing meals. I cherish those moments.

This article is not meant to incite fear regarding medications; rather, I aim to share my story and raise awareness about this condition. It’s crucial to weigh the benefits and risks when considering medication, but that doesn’t mean avoiding them entirely. Without medication, my ulcerative colitis could have led to irreversible damage, and I am grateful for the treatments available. If you are facing health challenges, I encourage you to consult with your physician. While stories like mine can be daunting, early treatment for any health issue can significantly improve outcomes. My prolonged undiagnosed period contributed to my current situation, and I hope my experiences—and those of others—serve as encouragement rather than fear.

Chapter 2: Understanding the Implications of Drug-Induced Lupus

In this video, "How to Defeat DISEASES and NEVER Get SICK Again! | #BelieveLife," viewers can explore strategies for improving health and managing chronic conditions effectively.

The second video, "What Disease Do I Have?" offers insight into identifying symptoms and navigating the complexities of chronic illnesses.