My decision to start Tysabri part 4 of 5

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!!!!








4 thoughts on “My decision to start Tysabri part 4 of 5

  1. I know the drive there and back from the infusion, then the infusion it’s self is pretty much a day of your life. But, on the plus side it sounds like Tysabri is working for you.I truly love what you said “I truly know how hard I could fight until fighting was all I could do”. That is my motto in life. That statement is SO true. All of us MS Warriors are tougher than most people. We do fight because giving up just isn’t an option! You are strong and positive and I love that about you! I am always here if you need to chat or vent!! Much love, Alyssa


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