My Experience So Far With the New Study
I wrote recently about how I was lucky enough to be participating in a new clinical trial for a CGRP antagonist medication. It’s very different from Aimovig, the one that was just approved, in that it is oral (a tiny pill) and an acute medication, to take after an attack has begun.
Eager for a new migraine treatment option
The first thirty days of the new study, I entered my migraine information into an electronic diary to set up a baseline. After that month, I received the bottle of pills and had more testing done (so far I have had an ECG done and blood taken at every appointment). I was very excited to receive the pills, because with my new job, my attacks had increased so much that I was barely making it through my shifts. I was eager to have an alternative choice to treat the pain that was invariably hitting every day, around the same time.
Feeling relief after the first pill
H said that my liver enzyme results needed to come back normal one more time before I started the pills, and it was difficult to wait. After H notified me that all was well, the first pill I took (so tiny!) I definitely felt, and it definitely worked. The sensation in my body was like that of an Imitrex injection, and even after the migraine symptoms were long gone I felt like my brain was being cushioned, or protected, for an additional 24 hours. It did help all aspects of the attack, and I didn’t feel the need to take anything else. During the study, I’m allowed to take acetaminophen (tylenol), and anti-nausea medication, along with a few other types. Not triptans, opioids, or ergot derivatives though.
Tracking every pill taken
For the first eight weeks of the study, I needed to travel up to the facility every two weeks, which is two and a half hours of driving. I received thirty pills, but am only supposed to be getting 9-14 migraine attacks per month, so it has sometimes been tricky to match the pills I take to the diary entries when my entire life I have taken pills without thinking. And yes, I definitely realize that statement doesn’t make me sound very careful. But it’s the truth. So pausing to make sure I am recording and thinking about each medicine I need to take is a good thing. If I take anything else for acute migraine purposes, I have a sheet on which I write it down.
Study medication in the second month
And how is this version of CGRP antagonist medication actually working, since that first dose? Initially, I thought it was great. The second thirty day period I had a lot of problems. Nearly daily migraine, lots of fatigue, some depression. But as John and I headed up to appointment last week, we talked about how I hadn’t even considered going to the emergency room.
While sometimes the study medication doesn’t work as fast as I feel Imitrex would, and occasionally doesn’t seem to work at all, the pain also doesn’t get ahead of itself, becoming unbearable. It simmers at a low point. I think “simmering” describes June perfectly. This would be the sort of unnoticeable improvement I’ve discussed before regarding my other trials. Did I feel exhausted and sick often? Yes. Was it from migraine? Yes. But was I in a lot of constant pain? Not really. I did manage to attend nearly all of tech week and performances for my daughters’ musical, unlike last year, and since receiving the medication on April 24 I have missed only two shifts due to migraine (I work 20 days per month, so that is 2 shifts out of 45 as of this writing). Not too bad.
Transited from one clinical trial to another
Back in our first phone call about this trial, H and I discussed what would happen if Aimovig were to be released. I knew it as AMG334, and it was the first study medication I tried on both a double-blind and an open-label basis. I was only on 70 mg, the lower dose, and its effects were not dramatic, but I did have improvement. She said I could drop out of the new study at any time, whether to try Aimovig or not. I thought I would wait and see. Well, obviously it was released. And H learned about a month ago that I can have it prescribed and stay in the study! We were both shocked and overjoyed. When I see my new neurologist in July, I will ask for it, and of course, keep you all updated about what happens.