Mike Has MS
First Tysabri Infusion
169-365: Tysabri
Originally uploaded by mikehillwig
I started a new chapter in my life last week. No longer will I be injecting myself several times a week. Instead, I’ll be making a trip into the infusion unit at Beth Israel Deaconess Medical Center for an IV infusion of Tysabri.
When I made the appointment, they told me to call earlier in the day to do the “prescreen checklist.” This is something the nurses have to do to make sure that you’re healthy enough for Tysabri. It does compromise the immune system, so they need to be sure. By doing this in advance, the nurse has the opportunity to order the meds from the pharmacy, meaning they’ll be ready when I arrive.
When I got to the infusion, Chris, my nurse, led me to a hospital bed, told me to get comfortable, took my vitals, made sure everything was in order and started my IV. She went to get my meds and discovered a problem. It appears that they hadn’t arrived from the pharmacy yet. She told me this may take a little while. I really didn’t mind. I had a book that was keeping me company. She brought me a sandwich, a soda, and some cookies. Really. They fed me!
When Chris came back with my meds, she did apologize. It turns out that she hadn’t sent the order to the pharmacy earlier in the day. Again, it wasn’t a big deal to me. I was in no hurry, and I had a book. When you deal with doctors as much as I do, you learn to bring a book.
As she started the IV drip, it was completely uneventful. The infusion takes an hour. If you’ve ever had an IV infusion, this was just like any other. At one point, I fell asleep. I vaguely recall someone coming by and putting a blanket on me.
After the infusion was done, I had to stay in the unit for an hour for observation. I guess in the initial trials, a few people got light headed after their infusion. Again, I had a book and took a bit of a nap.
The whole situation was uneventful, and I do love the nurses at BIDMC’s infusion unit. They’re all incredibly friendly.
Saturday, I was a little tired, but nothing too bad. I love not having to give myself an injection anymore.
After a long waiting…...every thing did got well. Not a bad at all
Posted by cisco training on 07/04 at 07:04 AMHi Mike, this is Wendy from PV. I had my first Tysabri infusion yesterday. I just really woke up tonight, but I feel good. Mine was not uneventful, a lady had a stroke and almost died right at my feet. It really freaked me out. I have lost a lot of the use of my hands and they say it has compromised my lungs and heart also. But like you I fight. The journey is unknown and it is scary, but you just have to keep going. Between the knee replacement and the advanced MS which is moving very fast they have told me I will never work again. I have spent my life around a lot of people so I get pretty lonely sometimes, but I use my computer for friends and kick myself in the arse when I cry. I feel a lot better already since this infusion, I had so much fatigue it was hard for me to even walk around, but that seems to be better already. I was scared a little because I started trying to have a reaction but they put something in the IV and it stopped. I am looking forward to reading your blog and hearing about your journey. Hugs, Wendy
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Posted by it training on 08/01 at 12:28 AMAsk your neurologist, they will know what infusion centers use this drug, also check with the major medical centers in St Louis like Barnes, SLU, Baptist, or St Johns, also check in KC and springfield, Im sure there must be somewhere in those communities that uses the drug, but your primary outlet should be your doctor, especially since he/she has to be registered and trained to even prescribe the drug
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