My Treatment Journey: Allergic Reactions - Tysabri - Tecfidera - Ocrevus | My Life With MS Podcast

My Life With MS

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In the second episode of "My Life With MS," I dive into my harrowing experience with Tysabri, a popular treatment for multiple sclerosis. If you're considering this treatment, my story might offer some insights, although it's not intended as medical advice.

After my MS diagnosis, Tysabri was selected as my first treatment. The process began with a half-dose infusion to test my body’s reaction. Initially, things seemed fine, but the second half-dose turned my world upside down. Shortly after the infusion, I experienced tightness in my chest, hives, and hot flashes. The nurses responded with Benadryl and steroids, but my symptoms persisted, escalating into a severe allergic reaction.

Over the next six weeks, my life became a nightmare. Every four hours, my body would erupt in hives, my chest would tighten, and I’d experience intense hot flashes. I was constantly taking Benadryl and prednisone, with frequent visits to my neurologist for steroid infusions. My body was in a state of chaos, and I learned I had developed antibodies to Tysabri, making my immune system reject the medication entirely.

The physical symptoms were compounded by emotional turmoil. I began suffering from panic attacks, triggered by loud noises, which sent me into convulsions. The steroids I was on also led to weight gain, irritability, and a condition called "moon face," where my face became puffy and swollen.

This experience left me questioning the protocols around Tysabri. I strongly believe that testing for antibodies before administering the second half of the infusion could have spared me this ordeal. I’m sharing my story to advocate for such testing to become a standard practice, ensuring that no one else has to endure what I went through.

Following my reaction to Tysabri, I was switched to Tecfidera, an oral treatment. Unfortunately, this drug also didn’t agree with me, causing severe stomach cramps and digestive issues. My MS continued to progress, and after six months, another MRI showed more active lesions. Tecfidera was deemed ineffective, and I was introduced to Ocrevus, a new treatment that had just hit the market.

Ocrevus, an infusion administered twice a year, was a challenging experience. I suffered from severe infusion reactions, characterized by fever-like symptoms, chills, and body aches. Despite these reactions, my neurologist and a second opinion from another doctor both recommended continuing with Ocrevus. The drug was supposed to be the best available option for slowing the progression of my MS.

However, Ocrevus also brought its own set of complications. The treatment severely weakened my immune system, making me extremely vulnerable to infections. I contracted COVID-19 during this time, and although my symptoms were mild, my recovery was prolonged. The experience highlighted the importance of protecting my compromised immune system, leading me to create and promote masks that signaled my vulnerability to others.

Living with MS and undergoing these treatments took a significant toll on my mental health. I became deeply depressed, struggling to cope with the demands of work and life while managing the debilitating effects of my illness and its treatments. The never-ending cycle of treatments felt overwhelming, and I found myself questioning how I had arrived at such a low point in my life.

This episode is a raw and honest account of my journey with Tysabri, Tecfidera, and Ocrevus. I hope my story can bring awareness to the potential risks and challenges associated with these treatments and encourage others to advocate for themselves in their healthcare journey.

Keywords: Multiple Sclerosis, MS, Tysabri, Tecfidera, Ocrevus, MS Treatment, MS Symptoms, Chronic Illness, Autoimmune Disease, Neurology, Infusion Reaction, Allergic Reaction, MS Podcast