Hello Everyone!
I have been on a sabbatical lately because I wanted to play something close to the vest. I have just undergone the first dose observation for Gilenya!
I was finally able to schedule the first dosage for yesterday after a very arduous year of undergoing tests, getting vaccinations, and sifting through multiple sets of conflicting information and directions. Even the scheduling of an appointment ended up being problematic, as it took several angry phone calls to get in touch with the scheduling department of my neurologists department.
I was cautiously optimistic after getting my appointment (funny enough, one person told me to show up at 8am and another called to confirm and told me to show up at 9am... I aired on the side of caution and showed up at 7:45am) due to issues I've had in the past with this neurologists office. The only reason I put up with this place is because they are some of the most highly regarded MS specialists around.
All complaining aside, I got in early yesterday morning, and after a few pieces of paperwork, I got right in. I was pleasantly surprised at how noninvasive the whole process was. To re-cap, the first dosage of Gilenya must be monitored in a doctors office for at least 6 hours due to the potential of the drug lowering your heart rate and blood pressure. I took my first pill at approximately 8am yesterday morning, and so far, so good.
The PA who was assigned to me throughout the day took my blood pressure and heart rate every 30 minutes on the dot between 8am and 2pm. I wasn't allowed to leave the premises, and was made to walk around the office every hour or so. The PA was very nice, and was even able to wrangle up the wifi password for my wife and I so we can get some work done (and watch some Hulu.) Everything went smoothly, and my BP never really dropped the whole day.
Once the 6 hours were over with, I had to run and get an EKG. That was the only frustrating part of the entire day. I got right in at an urgent care center, but was unfortunately the victim of a student learning process. It took an inordinate amount of time to get the EKG situated, which is frustrating since the test itself takes 30 seconds.
I have had about a half dozen EKGs in my time... and I have never had an issue with the sensors sticking to my skin. That was, until yesterday. Having a bit of hair coverage on my chest (not to Robin Williams levels, but still...) they were unable to get the probes to stick. As you can guess, I now have 2 shaved patches on my chest (and several small cuts because they were a little too quick and dirty with the razor!) But, again... complaining aside, everything was fine.
My pulse rate has dropped to about 60ish since I had gotten home last night. I normally sit around 75ish, so I've been completely wiped out since yesterday morning. For the past 30 hours or so, I have been struggling to stay awake; even though I actually slept for 10 of those hours. I'm hoping this normalizes sooner rather than later.
I will keep on progress reporting as things move along. The next step will be follow ups for my eyes (Gilenya can cause macular adema) and a follow up with the neurologist for blood work ups and MRI results... Fingers crossed, cause I wanna stay on this to avoid any more dang needles!
A bientot!
Adam
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