Since my last check in I have begun a new drug to treat my MS, Gilenya. After a few happy years on Tysabri my neurologist decided that my risk of PML was to great considering that I am JC positive. While I was ecstatic that I would no longer need to be infused for hours each month I was hesitant to leave the protection I believe Tysabri gave to me.
When I was in the middle of an exacerbation a few summers back it became obvious that Copaxone was not performing as expected and Avonex had already failed Tysabri aggressively stepped in and stopped the bleeding. 3 years later and I can’t complain, short of a Mono virus attack Tysabri was bullet proof. Don’t get me wrong when it came down to PML or a new drug the choice was pretty simple. But I do miss Tysabri?
How can you miss a treatment or have feelings for that matter? I will not miss getting jabbed or answering the questionnaire but I will miss meeting the people. Over the years I think I sat through about 40 treatments, some longer some shorter, but all were interesting in their own way. When I first started infusions I would check into the hospital and get admitted, my own room with a TV and bathroom, meals delivered and nurses that thought I was a local celebrity due to a paperwork error.
I met many people just starting their MS health care journey and I met people that had been on their journey for decades. We shared stories and knowledge, I taught and I learned.
You have a lot to live up to Gilenya.
Be a warrior today,
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