My Journey with Remicade Infusions: Managing Side Effects and Health Improvements

In December 2019, I started receiving Remicade infusions every four weeks as part of my treatment for a brain tumor. Over the past months, this treatment has brought both good and bad days. While there have been some health improvements, each infusion brings its own set of side effects. Here’s a detailed look at my experience with Remicade, from energy boosts to unexpected symptoms, and how I manage life in between treatments.

December & January: Initial Infusions

The first few weeks after my initial Remicade infusions were surprisingly positive. I had bursts of energy that helped me feel more like myself again. However, as the next infusion date approached, that energy would vanish, leaving me fatigued and drained. Still, I was hopeful, as the early stages of treatment seemed promising.

February: Familiar Patterns

February followed the same pattern as previous months. After my infusion, I felt an initial surge of energy, but as the next treatment neared, fatigue hit hard. It was frustrating to see the cycle repeat, but I tried to focus on the energy I gained, however brief it was.

March: Leg Pain and New Challenges

March threw some unexpected challenges my way. Just hours after my infusion, I began experiencing severe leg pain. Given my medical history, my first concern was a blood clot, but thankfully, an ultrasound ruled that out. Instead, I was diagnosed with muscle spasms, which persisted until my next treatment. On top of that, my right foot went numb, making things even more uncomfortable.

April: Physical Therapy and Persistent Symptoms

The leg pain lingered into April, though it wasn’t as severe as the previous month. Unfortunately, the numbness in my right foot remained, even with physical therapy. These ongoing symptoms made daily tasks challenging, but I held on to hope that things would improve with time.

May: Breakthrough and New Symptoms

May brought an unexpected breakthrough—the numbness in my foot suddenly disappeared. But as with all things in this journey, new issues arose. I noticed a round, light brown spot on my left hand. Interestingly, the spot disappeared after a few days but would reappear sporadically. It was strange but seemingly harmless.

June: Headaches and Rashes

In June, I felt great after my treatment at first, but that didn’t last long. Soon, I started getting frequent headaches, and that light brown spot on my hand came back. On top of that, a rash appeared in the corners of my arms. Despite these new issues, I did my best to manage day-to-day life.

July: Hyperpigmentation and Migraines

By July, the brown spots had spread to my legs, so I went to a dermatologist. They diagnosed it as hyperpigmentation, a condition often seen in citrus workers. While they couldn’t explain the cause in my case, it wasn’t the only problem. The rashes on my arms worsened and were diagnosed as eczema. I was prescribed a cream, but the real kicker was the escalating migraines. They got so bad that I had to schedule an earlier MRI, which thankfully showed a slight decrease in the tumor size, but no explanation for the migraines. Most days, I was bedridden.

August: A Surge of Energy Amid New Challenges

August finally brought a much-needed boost in energy. I took on the responsibility of caring for my grandmother, who developed COVID-19 symptoms. One morning, she couldn’t open her eyes due to muscle stiffness, and we had to make a trip to the hospital. It was a challenging time, but thankfully, she was treated with antibiotics, and we got through it together.

Ongoing Journey: Monitoring and Adjusting

As I continue my Remicade infusions, I remain vigilant about monitoring side effects and how they impact my daily life. Each infusion brings new challenges, but I’m committed to staying informed and proactive in my treatment. I’ll keep sharing these updates in the hope that my journey helps others who are also navigating chronic conditions and treatments like Remicade.

Conclusion

Managing a chronic condition with Remicade infusions is a complex journey with its fair share of ups and downs. From leg pain and numbness to skin changes and migraines, every month brings something new to manage. By documenting my experiences, I hope to provide valuable insights and support for others undergoing similar treatments. Stay tuned for more updates on my ongoing journey and the side effects I face.