I began receiving Tysabri at the end of 2009, or the beginning of 2010. I’m not sure which, but I will try to remember to ask when I go in for my infusion next month.
In the beginning, I was terrified that I was going to be that 1 in 1000 that would “catch” PML. (Some days I feel that I would have no luck at all, if not for bad luck.) I was also terrified of the needles; every doctor, nurse, tech, vampire, etc that pokes me with a needle blows my veins, and bruises me enough to make others question if I am abused. Thankfully, I have a port now!!
Every 4 weeks, I would have a full day of “adventure” to get my infusion. (even though the infusion only takes 2 hours.) The adventure included: leaving my house at 8 am, driving 1 1/2 hours into the city, paying an exorbitant amount for parking, and making what felt like a 2 mile trek to the infusion room, all before getting to sit in the waiting room to check in for my infusion. After following the drug company’s protocol for checking in, I would have a 20 minute panic attack while the nurse looked for and blew my veins. (Did I mention YAH PORT?!?! Yeah, 3 years before I finally got one! I’m a slow learner.)
Next, came the actual infusion itself. This part was a piece of cake, all I had to do was lay or sit there for 2 hours while I received the medication intravenously. Ok, it was a little more complicated than that. I had to go to the restroom 2-3 times because of all the fluids I drank before hand to make finding my veins easier, in addition to the hours’ worth of fluids they pump in your body with the medication. It was still relatively painless. I kept telling myself, at least it was only one time per month instead of getting sick every other night, like I did while taking another MS drug, Betaseron. Once I made the long drive back home, (hopefully missing rush hour) I could sleep the remainder of the day away if I needed to, and I frequently did. To be honest, at times, I also worried if the stress the whole ordeal caused me would make me have another ms flare up.
The only “reactions” I experienced from receiving Tysabri were headaches, and a feeling of sleepiness which until the last few years, I assumed were from the “adventure” itself.
Tysabri didn’t automatically fix me. I didn’t get a big burst of energy or start dancing a jig. In fact, the first change was almost unnoticeable. After about 6 months, it dawned on me that I hadn’t needed steroids, or been hospitalized for a new flare up in several months. Once I started to wrap my head around the fact that MS wasn’t running me over like a train, I began to relax a little bit. I started to commit myself to learning more about Tysabri, infusion centers, and what else I might try to do to FIGHT BACK against the MONSTER that had been winning the battle with my body and soul.
I have a very difficult time putting my experiences with receiving the infusion over the last 8 years chronological order, or giving exact dates so I’m not going to try. I will, however; give a bit of a summary.
I have had 2 relapses in 8 years, and they were minor in comparison to the ones in the past. My depression has improved. I still battle it every day, but I have a more positive outlook on life than I did 8 years ago. While Tysabri DOES NOT treat depression, I do believe a lot of my outlook has changed because I am not experiencing relapse after relapse or fast progression. I can walk about ½ mile continuously on a treadmill. (More or less depending on the time of day what other activities I have done and the temperature in the house) I have lost 60+ pounds and have started MOVING more. I have done a lot of physical therapy, including horseback riding for 3 years. I gave up soda. I believe all of those things have helped me become a better “MS Warrior”.
I have mentioned before that I am not trying to “sell you” on Tysabri, or to tell you that it “fixed” me. I am still “broken”. BUT, it did give me hope.
Whatever path you decide to take on your ms journey (no it’s not a vacation, but it is a long road) I wish you the best and encourage you to fight harder than you think you can. I truly didn’t know how hard I could fight until fighting was ALL I could do.
I will work on trying to finish the last part of “this story” later this week, but it has taken me more time to write this than I thought it would, and I need to keep moving!!!!