Posted By Jackie

I’m doing a short video on what my first dose of Gilenya was like, so I’m not going to go into huge detail about it right now. That hopefully, will be posted in a few weeks. I know..the suspense is killing you. I will say this. Dr. Rossman is kind of a rockstar in my neuro book. Apparently Novartis doesn’t have any kind of protocol for what kind of monitoring they are supposed to do in this 6 hour window so it is up to the doctor what they want to do. Dr. Rossman hooked me up to an IV took vitals a lot, and scheduled 2 EKGs during the six hours. He’s no joke.

During the monitoring period everything was peachy. I had my internetz, my book, and I was totally content. I felt totally fine. I started to feel a little tired because it was early, I was sitting on my butt and Gilenya lowers your heart rate at the first dose (that’s why you’re monitored). I had my first EKG at 2 hours after dosing, and apparntly it came back a little weird, so they did another one an hour later. That one was fine, so they decided it must have been the leads on the machine acting up or something. So I wasted more time…then it was time for my next EKG at around 5 hours after dosing, and that one was off too. They decided it wasn’t bad leads, that something was actually happening. Apparently the QT intervals were off (google it, I guess). Apparently that means that my heart was beating SUPER slow, and it shouldn’t be that slow nor have lasted that long. So…what does this mean?

It means that I have to go back tomorrow for another EKG to see how it is going now 24hrs later. It also means that I have to wait to really start this drug. :( Dr. Rossman wants to contact my cardiologist and get all my records from when I had that heart surgery a few years ago (due to my UC meds). Since it is the holidays, that might take longer than expected…then after the new year, I’m having more surgery and anesthesia effects heart rate…SOOOOO it won’t be until late Jan until I really get to try again. Which means another 6 hour waiting period. AND even then, he/we might decide its not the right choice for me.

This stuff doesn’t surprise me anymore. It doesn’t even really upset me. Its just annoying. I am really happy that Dr. Rossman is taking such care with my case and my history. Its a nice change. I guess I’ve been off a drug for like 3 years now…whats another month?

Also if you’re considering Gilenya, don’t let me experience deter you. I’m a freak of health complications and what happened with me today has never happened in his office before. I don’t think this is super common, not to mention I felt physically fine during the monitoring period. Have a good chat with your doctor and be confident in your choice, but don’t be scared.