My Journey with Abatacept: Why I Stopped After 12 Months

Managing a chronic illness often involves navigating a complex landscape of treatments and medications. For the past year, I have been using Abatacept, a biologic medication, to manage my symptoms. Abatacept works by interfering with the activation of T-cells, which play a role in the inflammatory process in autoimmune diseases. However, after careful consideration and discussions with my rheumatologist, I decided to stop the treatment. Here’s why:

Initial Experience with Abatacept

When I first started Abatacept, I was hopeful. The medication initially provided a significant respite from my symptoms, allowing me to enjoy a better quality of life. My energy levels improved, and my pain and inflammation decreased noticeably. It felt like I had found a key that unlocked a new level of stability in my health.

Increased Symptoms Over Summer

One of the most challenging aspects of living with a chronic condition is the fluctuation in symptoms. Over the summer months, I noticed a significant increase in my symptoms. Despite adhering to my treatment regimen with Abatacept, my symptoms worsened. The summer heat, known to exacerbate many autoimmune conditions, made it clear that Abatacept was not providing the relief I had hoped for during this critical time. I found myself struggling with fatigue, increased joint pain and inflamation, damage to my nails, and increased rashes, which affected my daily activities and overall well-being.

Decreasing Effectiveness Over Time

As the months went by, the effectiveness of Abatacept began to wane. Initially, the relief it provided lasted through the week, but gradually, I noticed that its effects were diminishing. By the end of the treatment cycle, the medication was barely lasting a week. This diminishing effectiveness was frustrating and concerning, as it meant I was experiencing more flare-ups and less overall stability in my health. I kept a detailed health journal to track my symptoms, and it became evident that Abatacept was no longer meeting my needs.

Impact of the Global Shortage

Adding to these challenges, there has been a global shortage of Abatacept. This shortage has made it difficult to obtain the medication without special approval. This made the decision to stop, an easy choice.

What’s Next?

Deciding to stop Abatacept was a no brainer - it was necessary for my well-being. Here’s what I’m focusing on now:

1. Exploring Alternative Treatments: I am working closely with my rheumatologist to explore alternative medications that might be more effective and sustainable in the long term. We are considering options such as other biologics or combination therapies that could provide better symptom control.

2. Lifestyle Adjustments: I am making lifestyle changes to help manage my symptoms better. This includes dietary adjustments, regular exercise, and stress management techniques. For instance, I’ve started practicing yoga and mindfulness meditation to help reduce stress and improve my overall well-being.

3. Monitoring and Adaptation: I am keeping a detailed health journal to track my symptoms and identify any new patterns or triggers. This helps in making informed decisions about my treatment and care. By understanding how different factors affect my condition, I can make better choices to manage my health.

4. Building a Support System: My family, friends, and healthcare team have been incredibly supportive throughout this journey. Their encouragement and understanding have been invaluable, and I continue to lean on them as I navigate these changes.

Conclusion

Living with a chronic condition is a continuous journey of adaptation and resilience. While Abatacept was part of my treatment for a year, the worsening symptoms, decreasing effectiveness, and global shortage led me to seek alternative options. By staying proactive and working closely with my healthcare team, I remain hopeful in finding a treatment plan that works best for me.

If you’re facing similar challenges, remember that it’s important to communicate openly with your healthcare provider and explore all available options. Your health journey is unique, and finding the right path takes time and patience. For those in need of support, consider joining a chronic illness support group or connecting with others who understand what you’re going through.

Your journey with chronic illness is a marathon, not a sprint. Stay informed, stay connected, and take each day one step at a time.

Meet the author

Damien Saunders
An experienced management consultant and business leader interested in digital transformation, product centred design and scaled agile. If I'm not writing about living with UCTD (an autoimmune disease), I'm probably listening to music, reading a book or learning more about wine.
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