Starting my Tysabri journey
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Toot! Toot! All Aboard. It’s time to jump on the Ty Train also known as Tysabri. And here begins Sunshine’s journey with Tysabri – the drug we’re hoping and praying begins to alleviate the relapsing part of my relapsing-remitting MS, decreases potential disability, and hopefully protects my noggin from future attack across that all important blood-brain barrier.
It’s quite a process, getting started on the Ty Train (Tysabri). I began that process yesterday and will continue to chronicle my journey each and every month. I selected Tysabri after weeks of research, discussion and debate. Copaxone was out for me after an IPIR attack with a twinge of an allergic reaction. I considered Rebif, but balked at the potential flu-like symptoms three times a week. The hubby and I settled on Tysabri.
My heart is swelling with great hope; the hope that my body will accept the treatment without allergic reaction and the greater hope that I will fare similarly to those patients who sing Tysabri’s praises. The hubby and I truly believe it’s the best current option for me: for my situation; my diagnosis and prognosis; my lifestyle; and my dreams for the future.
I started the process with a required visit to my neurologist’s office. That’s phase one of Tysabri’s Touch Protocol – a thorough screening process designed to ensure that only the proper patients are selected for this form of treatment. There is a very, very, very small chance that those on Tysabri could end up with PML – a rare but deadly brain infection. It’s all related to having a severely compromised immune system; those with such systems could be susceptible to PML, so the Touch System works to identify risky patients and disallow their participation with Tysabri. With more than 22,000 patients currently being treated with Tysabri (with the hopes of 100,000 patients on the drug in the next two years), not one patient has suffered from PML in the last two years. It would be irresponsible for me to just sweep the PML issue under the carpet. It’s out there, but it’s truly a minimal risk. Yes, I’ve been told it’s more likely for me to get run over by a bus this afternoon then it is for me to suffer from PML.
I also need to partake in yet more bloodwork, designed to provide a baseline measurement for check-ups, to screen for the gene that would predispose me to PML, to measure white blood cell count – and to monitor against liver disease while under treatment. I’m scheduled to have my newest MRI – we’re extending the range down to my T-spine this time around (in addition to my C-spine and brain from the previous scan). I’ll know shortly if any new lesions have appeared since November, 2007. We’re guessing it’s likely, due to a new symptom or two that have appeared recently and also the location of the symptoms. I like that I’m having a new scan. It’ll truly help me personally measure the impact of Tysabri right from the very beginning. And shortly, I’ll secure the date and time of my first infusion. Then I’ll begin counting the days. I truly can’t wait.
Last weekend I was jonesing for a good, healthy cry. This week, I’m just jonesing for several consecutive strong-and-healthy days – a series of small wins, even. You know what I’m talking about. One of those days where I just sit in my office chair and think, “Damn, I feel good this week!” I might throw a party the minute I hit a solid week of feeling what has become the “new normal” again. Let’s hope the Ty Train follows the map to my destination.
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