in which we talk a little about this new thing


My first dose! It really happened!

My first dose! It really happened!


I passed! I know I already said that, but I feel as though it bears saying again (and again)— I passed, you guys! I passed!

I went in for my Gilenya first dose on Wednesday, and it went about the way we’d expected it would; even with my nerves jangling away, my BP was at about 92/63, and my heart rate was at around 55. I mean, come ON, body, WORK WITH ME ALREADY. But the doctor looked over my records, and called my neuro, and felt comfortable with moving forward, so away we went, and I downed the first dose at about 9:45 in the morning.

It was like nothing happened, mostly.

That’s not 100% true, but it’s also mostly true. My heart rate did take a dip, and that was weird- and a little scary. I didn’t feel anything, though, which was also strange. I got down to a heart rate of about 38 beats per minute for a while there, which made me feel light- headed and a little off, but I think that was more from the “oh my god, isn’t that seriously not- okay?” moment of seeing that number on the screen, because once I’d gotten up and moved around, I was fine. My heart rate hit the mid- forties again, then settled back into the thirties, and I felt perfectly fine- so I’m pretty sure it was all in my head, all the surprise of seeing that number, rather than anything else. The doctor agreed, so we’re all on the same page: being a runner/ having good genes makes your heart do bizarre things, folks. (Thanks again, Dad!)

So- I had a moment, but I think it was just number- shock, more an all- in- my- head sort of thing than anything else. Other than that, it was really just a bit dull. I read my books, knit, made polite conversation, that sort of thing. There was a bit of kerfuffle over my general condition, and I’m not crazy about hearing the term bradycardiac so frequently, but I just kept reminding myself that there’s two forms of bradycardia: the sort you get from being sick, and the sort you get from being an athlete. I’m an athlete; I don’t need to worry. I just don’t like being any more of a medical anomaly than I already am.

For those who are following me to learn more about this whole Gilenya business, let me tell you how it’s gone so far. I’m only on day four, but it’s going well. I keep thinking I should be doing my shots, which is strange- I feel like I’m playing hooky, somehow, or being a screw- up. That’s really, really weird. I’m always been so very conscientious about my medications and my disease; feeling like I’m not doing it right makes me very uncomfortable. There’s this really overwhelming feeling that this tiny orange- and- white pill just couldn’t possibly do all the things that my shots did for me, and I didn’t expect to feel that way at all. I’m working with it.

Physically, I’m tolerating the med pretty well. The fatigue is definitely an issue, and I’m moving my dose to the evening to manage that. Your mileage may vary here- fatigue is a big problem for me in general, and if it’s listed with a med as a side effect, I usually experience it, so don’t necessarily get too spun up on this one— I’m just really susceptible to this. I’m also terrible at managing my fatigue- I’ll work my ass off during the day, leaving myself no resources in the late afternoon/ evening, so I tend to fall all to pieces once I get home at night. Don’t be me, folks. Anyway, fatigue is an issue, and it definitely picked up once I started Gilenya.

I’ve noticed some mild stomach upset- just feeling queasy after my dose, almost like early- stage morning sickness. I’m going to see if taking this with food helps at all- I’ve been medicating immediately upon waking up, and that might not be optimal.

The only side effect that’s really bothering me- outside of the fatigue, which I’ll confess is a real monster right now- are the headaches. These aren’t migraine- style headaches, but rather a dull, throbbing, all- day sorts of headache that just stick around. I’d set the pain level at about 4, but they just don’t leave, which rather elevates things. I can drop the pain with standard NSAIDs, but there are obvious issues with extended use of those, and I have FEELINGS about my other options.

As a patient who initially presented with optic neuritis and seizures, my team and I don’t see me being off of a disease- modifying medication at any time as an intelligent option, so I didn’t do the Copaxone- clearing period— I didn’t go off the med for two weeks like some folks do in order to get the drug out of their system before starting Gilenya. That means I still have C in my body right now, working its way out of injection sites for the next two or three weeks. It isn’t a problem, but it also means I won’t really know exactly how the Gilenya is working out for about two or three months. AH, THE DELICIOUS SUSPENSE. But honestly? I don’t think I’d trust any assessment of this new medication’s efficacy short of six- eight months; this sort of thing takes time, and impatient as I am, I’ll have to give it that.

Overall, this isn’t too bad. This is far, far better than when I initially got on Copaxone*: I’m not throwing up, I’m not having those horrible post- injection reactions that folks mistake for heart attacks and my hair isn’t falling out, so hooray! Any meds change means a pretty serious transition period- we always leave ourselves a few open days when I have a meds switch. I was really scared about this, and I still am; just managing to get on the drug was a big deal, but now I need it to actually work, and only time will show if that’s the case. There are some really great reports out there, though, and I’m a hopeful girl. My legs, belly and sides are beginning to heal, and I’m so excited about that— I know it’s such a small thing, but already, the lack of pain from injections there is just so, so damned nice.

So: fatigue, nausea, headaches. The forums say that these things should pass after anywhere from six weeks to three months. Moving my dose to the evenings should help with these, too- if I’m sleeping when the side effects kick in, I won’t notice them as much, I think.

It worked out, you guys. I have my teeny, tiny little orange- and- white pills. Now all I have to do is not pass out during STITCHES Mid- West and I’m golden.




(*A note: Copaxone worked well for me for years. I don’t think it worked quite well enough- obviously, I switched meds- but it still did good things for me. Different meds work differently for different bodies. Please don’t write C off just because it wasn’t perfect for me. Also, the initial period of adjustment for C isn’t fun, but it passes pretty quickly. Please feel free to write me with questions about Copaxone; I was on it for 4 years and did find a relatively decent level of success with that medication- and I know it’s worked very well for others. I definitely recommend it- it just wasn’t my “perfect med”.)

  One thought on “in which we talk a little about this new thing

  1. August 8, 2013 at 10:10 pm

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  2. August 13, 2013 at 7:39 am

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