I still have that red tootsie pop, uneaten, in a little box of mementoes. It’s been there for about four and a half years. But wait a moment… I’m sure you’re wondering what in the world I’m referring to… allow me to explain.
My husband and I jokingly refer to me as “the poster child of injectible MS therapies.” You see, multiple sclerosis is one of those illnesses that has no cure. There are several factors that work together to trigger the disease, that set the immune system awry as it attacks the coating of the nerves, but without a particular cause to target, vaccinations and solutions cannot exist. Despite this limitation, however, there are “disease-modifying therapies,” medications that can help slow down disease progression. These therapies weren’t available until the mid 90’s, and three of them were on the market by the turn of this century. A fourth came at the start of this decade, and the four have something noticeable in common: they are given via injection. After our girls were born and I was able to take one of these medications, I did – and my doctor and I questioned the efficacy of each (there were still “new glow worms” in my MRI’s, though they didn’t come quickly). While I was taking the fourth of the medications, a new therapy was released, one that had proven to be much more effective in clinical trials. Though it wasn’t a cure, it did, in effect, put the brakes on new symptom development for MS patients.
This medication? Tysabri was the name. In January 2005, I was the first person to receive this treatment at the infusion center of Fort Wayne Neurology. The other four MS medications involved an injection one to seven times per week (I’ll spare you the details), but Tysabri was given monthly as an hour-long infusion at the medical office. I got to sit in the waiting room for an hour after, to make sure I didn’t have any type of allergic reaction, but then I was free to go.
“So what’s with the tootsie pop?” you may be wondering… I’m getting to that. I think the nurse in Fort Wayne was as excited as I was. Montie was thrilled, and she wanted to do something special, as she knew how long they had been waiting to offer something with this type of promise. “I wish I had a medal or something to give you,” I recall her saying, “…but wait!” And from a drawer she pulled out a red tootsie pop. I have a bit of a sweet tooth, and I’m surprised I didn’t consume the thing, but it was too special, as it was my single memento of that hour in the infusion room. I experienced no side effects (unlike the four other medications I had taken), and I would have walked away with just a Band-Aid. But I had my tootsie pop, and it made me smile.
I was only able to schedule a few weeks in advance, and I returned a month later for a second infusion. But then, on February 28, I called to set up the March infusion… and as I look at press releases, I see why it was so difficult to receive an answer from the scheduling folks. You see, Tysabri had been pulled from the market about an hour before I called, and offices were to stop giving the medication. RIGHT AWAY. No more. And thus ended my first Tysabri experience.
Why was it pulled? Two individuals who had been taking Tysabri, part of the original study group, had developed a life-threatening complication, PML. (If you are curious, this stands for Progressive Multifocal Leukoencephalopathy – which can be sung to the tune of Supercalifragilisticexpialidocious, I have found.) Upon extensive study, it was found that because these two individuals were taking another medication also, the combination of these two drugs weakened the immune system too much. PML is not extremely common, but those it strikes tend to be organ transplant or AIDS patients. And PML is like MS but much worse, and it is often fatal.
I understand why the FDA pulled Tysabri from the shelves, and I did end up restarting an injectible therapy. But I was a bit frustrated… before and during my Tysabri time, I hadn’t needed to use a cane or other mobility assisting device very often. Though I was convinced that my every-other-day injections were helping, I did slowly progress, and the folded cane I had kept in my handbag was unfolded and used quite frequently (almost always, in fact). But that’s another story – now back to Tysabri.
This medication, this treatment that was so helpful to so many, was reexamined and studied quite rigorously, and after much support was expressed by researchers, doctors, patients and such, the FDA did reapprove Tysabri in July 2006! This meant that physicians, nurses and patients would take part in the “TOUCH” program to closely monitor responses to and progress with the medication. While all of this was happening, the office in Fort Wayne was to become part of a new wing with a new infusion room, and I had another “first.” I was not only the first Tysabri patient in 2005, but I was the first Tysabri patient and the first individual to have an infusion in the new room there in 2006. No tootsie pop, but that was perfectly fine. It was nice to have something happy to celebrate on September 11.
So today, September 11, 2009, marks the third anniversary of my Tysabri infusion (this time anyhow). People like to ask if the medication is working – that’s a tough question. What it’s supposed to do is keep me from rolling down the hill of progression as much as possible. Following that definition, I do think it is doing its job. I’m not using a cane or wheelchair in my dreams, and that could become reality eventually, but for now I’m thankful for what I do have, even if I have to sing my blessings to the tune of “Supercalifragilisticexpialidocious.” I have a lot to be thankful for, and September 11 is a day for me to remember that.