I just had my second Tysabri infusion yesterday. With this, I have had second thoughts about posting about the infusion. Things did not go as smoothly as I would have liked. Dr. Foley told me that were I to have an allergic reaction to Tysabri, it would likely happen during the second infusion and it did.
I went into the infusion fully prepared with movies loaded onto my ipod. I was feeling positive going in and after my vitals were recorded and the IV was in, I settled in for what I thought would be about a two hour movie. During my hour infusion, I felt a little funny and thought I may be a little chilled but it was so mild that I barely noticed and chalked it up to anxiety. When the infusion was over, I knew I wasn’t feeling right but couldn’t describe any specific problems. My temperature was up a bit since the beginning of the infusion. I told the nurse about how I was feeling and she suggested that I was having a reaction. She said she was going to treat me with Benedryl and that I should arrange for a ride home as I may be sleepy. I called Mark and asked him to pick me up around 4:00 and told him I would call back when I knew more about what was going on. As I should have known, he dropped everything and headed over to Dr. Foley’s office before I could call him back.
I walked back into the infusion room and sat in my chair. Here is when things got a little crazy. I got really dizzy and chilled and nauseous. REALLY NAUSEOUS. The nurse came over and began the Benedryl and I proceed to put my head in hands and lean way over. Another woman having an infusion was asking me questions, someone else offered an anti nausea medication and I was just breathing heavy trying not to throw up and I imagine I was freaking out the other patients when Dr. Foley came in and moved me to a more secluded part of the room. I was then walked into a private room where I could lay down. I think it took about an hour for the main symptoms to pass. Mark sat with me as I continued to receive IV fluids and recover.
The part that scared me was not that I had the reaction but that Dr. Foley would not let me schedule my next infusion and suggested the possibility of not infusing again based on the severity of my reaction. I explained that I would rather go through this where the treatment was controlled on a monthly basis rather than the weekly side effects I suffered with Avonex or Rebif. Dr. Foley explained that the side effects may worsen each time so we had some things to think about.
Mark and I went home about 4pm. (the infusion started at noon). I was tired from the Benedryl and the whole ordeal. Dr. Foley suggested I continue to take Benedryl for the next day or so to avoid further side effects like the delayed effects I had after infusion one. I have had a dull headache, major fatigue and some mild chest discomfort but nothing severe. If everything still looks good by the end of the week, I am going to push for scheduling infusion number three.
If you are considering Tysabri, do not let this sway your vote. It is clear, based on my severe side effects with every MS drug that I have tried, that I have a hypersensitivity to these drugs. These side effects do not happen to most people. In fact in one study, the reactions were as follows….
Table 3. Adverse Reactions in Study 1 (Monotherapy Study)
Adverse Events (Preferred Term)
TYSABRI n=627 Percentage
Placebo n=312 Percentage
Tysabri – 38%
Placebo – 33%
Tysabri – 27%
Placebo – 21%
Tysabri – 19%
Placebo – 14%
Tysabri – 5%
Placebo – 3%
Acute hypersensitivity reactions**
Tysabri – 4%
Placebo – <1%
Other hypersensitivity reactions**
Tysabri – 5%
Placebo – 2%
** Acute versus other hypersensitivity reactions are defined as occurring within 2 hours post-infusion versus more than 2 hours.
So, it would seem I have alot to think about based on the past two days. Even now, feeling as poorly as I do, compared to feeling so great a few days ago, I am convinced that Tysabri is the drug for me. It gives me the most hope with the least frequency of side effects.
I remain hopeful that Dr. Foley will give me another chance!!