I guess, technically, it's Day Three on Gilenya, but it's two days since the First Dose Observation, so, whatever. I'm working my dose time from morning to afternoon. Most of the support groups have recommended taking it an hour later every day until reaching the desired dose time. I forgot what time I took it yesterday, so I took it at 10:30 this morning. I want to take it in the evening because it definitely makes me sleepy, which is another reason that I feel like it's only been two day; I've been sleeping so much I feel like there is no possible way that it's the end of Saturday already.
Impressions: It's weird. I don't feel sick. But, I don't feel altogether well. On the Rebif, I definitely felt sick about two hours after the first shot. I felt like suckity-suckity crap most days, and not just on days where I took my shot. On my shot days, sometimes, I couldn't even get out of bed. At all. Every single day for two years I woke up feeling tired, and nauseous, and emotionally worn. Since I've been off of the Rebif for about five weeks, I have gotten used to waking up feeling like a normal person, you know, grumpy because it's morning, wishing that I could press snooze a few more times, but not dreading the long (oh so very long- we work a four ten-hour day work-week) day ahead. Yesterday and today, I felt somewhat rested when I woke up, which makes me hopeful. However, I am sleeping a lot, like two naps to get through the day. Which, is fine for weekends, but might not be fine when I have to go back to work. There isn't anywhere to lay down for a quick nap, unless I curl up on the floor... or maybe on the Board Room table, but that would be weird. The other side effects are hard to describe. I don't feel like my body is sick, but more like my body doesn't know how to react to it's environment and... I don't know. It's just very different than either of the interferon treatments.
Side Effects: Now to try to describe the indescribable.
Short term memory loss: This is the first thing I noticed. But, I don't want to call it short term memory loss, because it's not a totally accurate description. When I drove myself home from the First Dose Observation, I got off at the wrong exit, but when I realized that I had the wrong exit I justified my mistake (to myself) that it was due to the confusing freeway construction in the area. As I was driving down State Street, my gas light came on, so I pulled into the nearest gas station. I slid my card through the system and hooked my car up to the tank. I turned around to look at the mountains and to let the wind blow my hair away from my face. The system beeped. I unhooked everything, got back into my car and drove about a block when the gas light turned on again. THEN I realized that I had not given my car enough time to fill at all. I didn't want to embarrass myself by going back to the same station, so I drove a little further to the next station.
Also, I keep misplacing everything, everywhere. It's like I don't know where things go, or I forget that I'm holding something, so it just drops and stays there until I walk by it and get confused as to why my cell phone is in the middle of my dining room floor. I haven't been anywhere but my little apartment since Thursday afternoon so it's pretty easy to fix my mistakes throughout the day. I have a feeling it will be less easy when I go back to work and mistakes are harder to fix.
Fatigue: This has been different from my M.S. fatigue, and I don't quite know how to put my finger on how it is different. I slept for 12 hours Thursday night, had two two-hour naps on Friday, slept 14 hours last night and have had one three-hour-hour nap today. Today was the first time I took my Adderall (for fatigue) since I started the Gilenya, and I still needed a long nap to get through the rest of the day! Yikes! That is going to need to change very soon!
Headache: Headache. Headache. Headache. It's a weird headache, not like the ones I have normally. It feels almost like my head is separated from my body like a balloon filled with heated lead... that floats... and might spill out over everything. I gave myself permission to take some Advil, (I have a strong no-Ibuprofen-because-it-gives-you-a-stomachaches personal rule) but the Advil did help with the headache. After I took it I realized the Advil had expired because it had been in my cupboard for about three years. Oops!
Hot and cold flashes: These have been pretty significant- so cold that I can't get warm under lots of covers and a heating pad that I have stolen from my kitty's favorite sleeping spot -so hot that I start visibly sweating in a 70 degree room. It's kind of like being feverish, but without the weakness.
Resting heart rate low: My resting heart rate is dropping for about two hours after I take the pill. I have a monitor and my regular resting heart rate can be anywhere from 75-80 bpm. It has been dropping to 45-50 bpm, which is manageable.
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| First impression of Gilenya: it makes me sleep a lot. Good thing I have a willing nap buddy. |
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