“I am scared to try it and I’m scared to not try it.” That’s what I’ve told everyone who has asked me if I’m excited to try Aimovig. As I prepare for my first injection in a few hours, I continue to be afraid while simultaneously ready to try it.
Aimovig might not work for me
Most people assume I’m afraid that Aimovig won’t provide me with noticeable relief. Unexpectedly, that’s not what I’m afraid of. I have a reasonably effective (though absurdly expensive and finicky) treatment in the gammaCore. It’s far from perfect and I’d like something more predictable, but if Aimovig fails, I won’t crash to the ground without a safety net. And Aimovig is the first of four CGRP-inhibitors that will be available in the next couple years. If it doesn’t work for me, another one might. So, I’m pretty comfortable with the possibility it won’t help me. And yet I’m still afraid.
I’m scared to try Aimovig because of potential side effects
I’m mostly afraid of side effects. Even though the reported side effects are minimal—constipation is the biggest issue and a small number of study participants reported muscle cramping—I’m still scared of encountering side effects that didn’t show up in the clinical trials. In unscientific online discussions, patients are reporting an increase in migraine severity or frequency or fatigue following the injections. While these could easily be coincidence and not due to the medication, the thought of more fatigue chills me. It’s my most disabling symptom right now, far worse than the pain, so potentially signing up for more is distressing. And I’ve seen a friend in a terrible migraine spell following the injections. This could be coincidence, but maybe not.
All that said, I’m actually not all that scared of the short-term side effects. After all, if they’re unbearable, I can stop taking the drug and the side effects will fade away. What I’m most worried about are the long-term effects. What adverse effects might show up after large numbers of people have been on Aimovig for 10 years? This question is currently unanswerable, which is the part that nags at me. [I brought up these concerns with my headache specialist after I drafted this article. He told me that with the way the drug works, the short-term response would probably have already indicated any potential long-term issues and that some patients have been on the drug for five years without adverse effects. He did point out that trial participants are otherwise healthy, so it will take longer-term use from a broader population to truly know if any other adverse effects will show up.]
Yet I’m scared to not try Aimovig, too
I could be one of the lucky ones who has a huge improvement in my migraine attacks. If I wait another five or 10 years to try Aimovig and it helps, I would feel like I’d wasted all those years in between. Given my headache specialist’s reassurances and the fact that I’m otherwise healthy, I did my first injection on August 21, 2018. Being scared to try it and scared to not try it told me I had to go for it to see what happens.
When it comes to planning vacations or other events where travel is required, how much does migraine factor into your decision-making?