These past few months have been a rush of fresh air. Aimovig. The drug we’d all been waiting for, was approved by the FDA. Now a few months later, we have Ajovy and Emgality in the mix as well.
For a brief background, new research has pointed to CGRP being a main inhibitor for migraines, and the goal of these new drugs is to either block the receptor or weaken them.
For months, I read through the trials and the testimonies. Those from individuals who had been a part of early testing and focused studies. Chronic migraine patients, just like me, who suffered from more than 15 migraine days each month.
These people showed promising results. Or so they said.
The average reduction was by 6 days, which is huge, even if you’re suffering from a migraine every day.
And then they talked about the common side effects. Irritation at the injection site. Constipation. That’s all they list.
What if I told you, as a migraine patient, the actual results show that only 15% of patients have a positive response to Aimovig.
One of the original doctor’s working with the medication touched on that subject. He also pointed out that the millions of people suffering will all want access to this possible life altering medication, even though it’s comparable to a lottery ticket and people will be stuck paying upwards of $8500 for these drugs.
So, in August we sent in for approval for Aimovig. There is nothing quite like being out of options for treatment and a new drug surfacing as you come to this conclusion.
September. The first dose arrived.
Swelling and pain at the injection site is an understatement. It felt like I had been shot. I could feel the medicine fighting to move through my veins. It was struggling as I ended up with golf ball size swollen area. That only lasted a few hours, thankfully.
October. Dose number two.
This one was relatively painless. Maybe I just knew what to expect. Maybe my already throbbing head made me too distracted to care.
November’s dose is in the fridge. I’ll be throwing it in the trash. I’m done.
Today I did a bit of reading.
You see. It didn’t start off all too bad.
First, the fatigue. Oh boy, I thought my body needed extra rest back in June when I was working almost 50 hours a week. I’ve never been so exhausted from not sleeping and then laying on the couch.
But, I did just move across the country and the entire course of my day to day life really shifted. So of course, my body would have some adjusting to do, right?
Then the muscle tension. I became awfully aware of how strained my left leg was at my last massage. Same leg for shot number one. My therapist was shocked as to how tight the band was that traveled along the back side of my knee. And man, I thought I was going to burst into tears as she tried to release some of that tension. I think the largest shock was when she moved to my right leg. Obviously, my T-band has been tight since my knee injury, but the band on the back of my leg, was LOOSER. I think my past physical therapist would shit himself if he heard that.
I noticed I was focusing my yoga practices in on stretching my hip flexers out. They’ve always been tighter than normal, because let’s be honest here, I don’t do regular exercise and I sit a lot. But, this tension was worse. Which, is also odd. Considering I’ve successfully been doing yoga close to every other day after having stopped for a few months. Shouldn’t my flexibility be going up?
Which brings me to how much worse my neck has gotten. This time last year when I started researching massage therapy, it was because my neck was tense. But, I wasn’t struggling to turn my head.
Clearly stopping my weekly therapy had some impact, right? Yes and no. Nothing seems to loosen my neck. Changing sleep posture. Paying attention to how my neck is being supported in yoga stances. Working to sit up straighter.
The pain is agonizing. The pain isn’t even associated with my damn migraine. The tightest part of my neck isn’t even an area my previous therapist worked on. I shouldn’t wake up unable to move. It’s like I’ve developed an extreme case of TMJ overnight.
Now, I took these concerns and expressed them as my symptoms of Aimovig at my last appointment. I’d seen things here and there where other people were experiencing these symptoms as well.
But you see. I haven’t stopped shaking in almost a week.
My blood pressure was way off when I went in. I brushed it off to having taken my medication along with my nausea medicine. My heart rate was through the roof.
I don’t remember having such a severe and long lasting reaction in almost a year.
I haven’t had an actual appetite in almost a month. I can barely look or even think about food without wanting to get sick. I’ve fallen back to chicken strips, rice and orange sauce as a “sustainable” meal option. I haven’t struggled with food this much since my freshman year at Clemson where I ended up losing 15 pounds that I didn’t have to lose in the first place.
Even my go to peanut butter toast is repulsing.
I wake up, I’m nauseous. I sit in the dark and try and enjoy a cup of coffee, I’m nauseous. I eat, I’m nauseous. Maybe half the time, eating cuts the nausea in half. But it won’t go away. I’m still nauseous when I crawl into bed.
I got new nausea medication. They use it for chemo patients. I’m afraid to try it.
I took twice the amount of melatonin as I normally do last night… why? I can’t fall asleep. It feels like I’ve transitioned back into my junior year of high school where I’d sleep every couple of days, maybe. That was before I was told to take melatonin. I know my insomnia is bad, but this is really bad.
I shouldn’t be having a panic attack when just 15 minutes ago I was drifting to sleep on the couch. But the second I lay down in bed, my heart thinks I’ve just run a marathon.
So I can’t sleep and I think I’m going to have a heart attack 90% of the time.
Even sitting here now. I only had my first cup of coffee. I dumped the second because my heart won’t calm down. To be honest, I’m scared.
And then this morning, as I’m sitting here wondering when my migraine will ever break, I started looking for other people’s experience with Aimovig.
If you’re interested in reading my findings, this is was the most helpful source: https://www.drugs.com/comments/erenumab/aimovig.html
Come to find out, I’m far from alone in the way my body has responded. I never would have thought that the nausea, and my changed blood pressure, and the severe insomnia had anything to do with Aimovig.
I’ve been here thinking I just need to force myself to eat, like all the other times my migraines have made eating seem less than desirable. I’ve been consciously breathing thinking if I can just calm down, maybe this will stop. I’ve been wrapping myself up in a hundred layers thinking I’m shivering because I’m cold. But I don’t get warm. I’ve been convinced I just need a new pillow or that they forgot to put any melatonin in these supplements.
Yet so many other people are experiencing it too. Everything down to the muscle spasms and severe neck pain.
It makes me chuckle that the FDA approved this.
I’m ready to check myself into the hospital, get a blood transfusion and fluids, just so I can get this medicine out of my system.
Yes, medicines are bound to have side effects. But the pain hasn’t slowed. It hasn’t dulled. It hasn’t done anything but remain the same. So, what, I get all of the unlisted side effects and none of the listed, well documents benefits?
I don’t think so.
So, Mr. Miracle Drug that everyone had their fingers crossed to change my life, my life was better before you came around.
So, to put it politely, I’m breaking up with you. And I won’t be giving your sibling drugs a test drive, because the lack of honest discussion of the true side effects and the over indulging in optimism does much more damage.
Hopefully, 15 years down the road, we don’t all come to face some horrifying long term side effect that no one considered a possibility.
To those of you considering Aimovig or one of the similar medications, please take adequate time to research and really dig into side effects. Pay attention to how the medication impacts you and if the benefits are outweighing the side effects. Aimovig has provided tremendous relief for a lot of people and has given some people their life back, but as migraine patients, we are all too familiar with the concept that what works for one doesn’t work for all. This is simply my side of the story.