CGRP and Me
For more than two years, the Migraine.com community has been following along as I participated in a clinical trial for Teva, receiving injections of the drug or placebo every month as they tested what is now Ajovy to see if quarterly or monthly dosing worked better. I had already completed a double blind/open label study for Amgen. Months after the Teva trial ended, you might remember, I was offered yet another study, for an acute version of the CGRP antagonist, in a tablet, to take after the attack has begun. I thought it was time to update the community here on that trial, Aimovig, and my response.
Trying out oral CGRP pills in the trial
The first thirty days of the new study, I entered my migraine information to set up a baseline. After that month, I went up and 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, due to the library building being too warm despite its air conditioning. H said that my blood work needed to come back okay one more time before I started the pills, and it was difficult to wait.
Mixed relief from the study drug
The first pill I took, I definitely felt, and it definitely worked. I felt like it was cushioning my brain for an additional day. It did help all aspects of the attack, and I didn't feel the need to take anything else. During the study, I was allowed to take Tylenol and nausea medication. The first month went well, but I began to be less sure of the tablet's effectiveness. During the second month, I had to resort to Imitrex several times because I didn't feel enough relief from the trial medication and was terrified to let the pain get out of control. When I was given my second bottle of pills, they were so useless I wondered if the drug company had accidentally/on purpose filled the bottle with a placebo instead. They had said I could take Aimovig as well as the study medication, but I was starting to not see the point in that.
Terminating my participation in the clinical trial
The first time I saw my new neurologist in Chicago, she told me that she felt the acute tablet was not going to be effective enough to be approved. She told me to drop out of the study, and she would prescribe Aimovig. I was to start out with 70 mg, and the next dose (a month later) would be 140 mg, which is twice what I was getting during the study. Since I didn't feel it was all that effective I hoped that the double dose would help. I told H, and she said that was fortunate because the drug company had changed their mind and decided they would not allow their study participants to also take Aimovig. It was a little sad when I drove up to the office for the last time, gave the pills back, and signed the paperwork to terminate my last clinical trial. Participating definitely changed my life.
Switching to Aimovig
My first month on Aimovig seemed pretty good, considering I used only 70 mg (one injection). The second month when I increased to 140, it seemed to actually work less well, but I attributed the increase in migraine to fall in Ohio, which is always horrible for me. The third month was even worse. I had almost constant head pain that felt different. It radiated behind my ear, and my neck and shoulders were always sore. I kept waiting for the weather to change, or the stressful event to be over, and finally I realized that I was not going to start feeling better and I would have to adjust to my current situation.
Sharing my experiences with others
In late September, both Teva and Eli Lilly released their versions of the CGRP antagonist: Ajovy and Emgality. The mechanism of these two is different than Aimovig, and Ajovy has the option of quarterly or monthly dosing (they determined they were equally effective). I had been taking a Facebook break, but I decided to go back to let people know that Aimovig wasn't working for me. To my surprise, I found that some of my migraine friends were having the same difficulty in their third month of treatment, including the neck and shoulder pain. I decided I would ask Dr. D at my appointment in November if I could switch to Ajovy, which did work better for me in the trial anyway.
An emotional breakdown after built up hope
I have to say, guys, that I had a bit of an emotional breakdown over Aimovig failing so miserably for me. I had spent the last four years dreaming and hoping and writing and not only raising the hopes of my family, but the migraine community as well. I also had the familiar, horrible “I really thought this would work and it didn't, because nothing ever does” feeling.
Then one day last week, after having to leave work early again (I've been missing one full shift every two weeks or so, and also had to end my shift early quite frequently), I decided that I didn't want to wait until my appointment to talk to Dr. D about Ajovy. I emailed her and explained how I was feeling, and she responded the same day that I should not do the fourth dose of Aimovig, which was due that weekend, and she prescribed Ajovy. The specialty pharmacy called within a few hours and told me it had already been approved by my insurance. The pharmacist, who also had helped me get my Aimovig, told me that if it hadn't been approved Teva would have covered the entire cost, and he gave me the numbers for a Teva-supplied discount card to zero out the copay.
Cautiously optimistic again
Four days later I was picking up my Ajovy at the pharmacy. Ajovy doesn't have an auto-injector; its a very small pre-filled syringe. The needle is extremely small and the shot was easy and painless. Right away, I felt the familiar sensation from the clinical trial of the medicine moving my pain and forcing it out. I fell asleep and slept better than I have in weeks. In the morning my head pain had returned, but with less intensity. Throughout my library shift that morning it slowly improved, until the afternoon, it was all the way gone.
I know that a week to ten days is the minimum amount of time within which I should notice a change. I also know that I should not already be getting my hopes up, again. But I can't help it. I'm feeling optimistic.
Have you checked out the new Community Hub yet?