Miss Migraine tries Aimovig!

Banner that says "The Adventures of Miss Migraine"

The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine.

Back in the spring, I wrote about my excitement over Aimovig, the first FDA-approved pharmaceutical treatment developed specifically to prevent migraine. (The Pittsburgh Post-Gazette even interviewed me about it!) In October, my health insurance provider approved my doctor’s request for the drug, and I administered the first dose on October 15.

And you know? I think it’s working. I’m not cured, but I’ve had fewer migraines overall this past month, and the migraines I’ve had have been less severe. When I have had a severe migraine, the recovery time is shorter.

Now, of course, Aimovig isn’t just a pill you can pop. It’s an injection that you administer to yourself once a month. And it’s a pain in the butt to store.

A room thermometer next to an Aimovig box.

You have to keep it refrigerated, but not frozen. When you’re ready to use it, you have to let it come to room temperature for at least 30 minutes, but room temperature can only be between 68 and 74 degrees Fahrenheit. Once it’s been out of the fridge for more than 30 minutes, you have to use it; it cannot be re-cooled.

I live in an old, drafty house with mega powerful radiators, so fine-tuning the temperature in any room that precisely may prove challenging. It’s either freezing or a sauna, with very little in between.

But if it works? Hell, I’ll buy a temperature-controlled incubator if I have to! I did buy a nifty little room thermometer so I can be sure it’s warming up in the proper temperature range.

Once Aimovig comes to room temperature, it’s time to administer the injection. It works similarly to an Epipen. You take the safety cap off, push it against your skin, and hit the start button that triggers the needle.

I’m no stranger to self-administered injections, as I have to inject myself with B12 twice a month because of my pernicious anemia. But, damn, the Aimovig injection hurt! The needle is a much larger gauge than what I use for the B12 injection, and it’s spring loaded. Holding it against my skin for the whole time was more challenging that I expected.

Aimovig box and injector pen.

Still—if it works, I’ll deal with the 30 or so seconds of pain and a little soreness at the injection site.

Aimovig comes with excellent, thorough instructions, and my doctor (bless her) went over them with me in detail before she sent the prescription to my pharmacy. My pharmacist, Fred (as you can imagine, we’re real tight), told me I was the first patient to get Aimovig from my pharmacy. Apparently most other insurance companies in the area are not covering it yet.

Even my insurance company only covers it at the “non-preferred brand name” level, which comes with an $80 co-pay (same as my triptan, Axert, which also comes with an $80 co-pay despite being a generic.) So, that’s not great. Thankfully, I’m able to get Aimovig for $5 with the Aimovig Ally program.

The lack of coverage and the high cost of the co-pay are going to be a real problem for a lot of migraine sufferers, so if you have a few moments, give your insurance company a call and ask them if they will cover Aimovig, and ask them why they aren’t if they say no.

I’m due for my second injection November 15, and by December 15 I should have a fuller picture of exactly how much this new drug will help me. Fingers crossed!

Share your experience with Aimovig in the comments below!

Share

9 Responses

  1. acooknick says:

    My mom took her first dose a few days ago. She hasn’t noticed any results yet, but it’s encouraging that you thought it helped! Fingers crossed for both of you!

    • Kelly Lynn Thomas says:

      I might see if I can double my dose for December. I do think it’s helping, but it’s definitely not a miracle cure. =/

  2. Lisa says:

    Your experience is similar to mine – everything seems a little bit better, but not amazing. I started in September and will double my November dose to see if that gives me better results. My insurance is paying for it – I qualify for medicaid and have UPMC for You. I think my co-pay is only $3. I’m crossing my fingers for a miracle with a double dose.

    • Kelly Lynn Thomas says:

      I’ve got my fingers crossed for you. Have you taken the double dose yet?

      • Lisa says:

        I took my double dose a couple of weeks ago – again, nothing earth shaking, but maybe a little bit better. If I had to pay a big copay, I don’t know that I’d continue using it. I am curious to try one of the other ones that attacks the same issue from the other direction.

        • Kelly Lynn Thomas says:

          Yeah, I was reading about those, too! Curious to see if they work for people that Aimovig doesn’t, and also how they can be used alongside other preventatives. Fingers crossed you will find something that’s really effective for you soon! I’m still taking all my other preventatives, but I’m hoping to stop at least one of them soonish, because it messes with my sleep cycle.

          • Lisa says:

            I was wondering about combining them too! Seems like it could be an awesome double whammy! Someone asked if I’d be willing to be the test subject since the combination approach hasn’t been tested – oh hell yes!! I tried to explain the desperation we feel, but no one that hasn’t suffered truly understands.

  3. Lisa says:

    Hi Kelly – – my name is Lisa and I have had chronic migraines for 40 years now, starting with a severe head injury as a teenager, followed by a spinal injury in the military. My longest static migraine was nine months, landing me in a wonderful inpatient program out in Michigan, where I learned my triggers and how to/not to use triptans (to avoid rebound). I used to end up in the hospital with some frequency to control them. Flash forward to recently – – I am now 55 years old with a half dozen autoimmune diseases, hundreds of past surgeries, lots of pain and fatigue from many things – – and had gone back into a cycle of near daily migraines. I was so desperate I finally decided to try the Aimovig, in the middle of a static migraine cycle I could not break with anything at my disposal. I was really nervous, but it was really a simple process, and other than some mild to moderate discomfort as the medication was actually injecting in, I didn’t find it to be that big of a deal, at least relative to what I go through daily, often involving needles. I had no idea how long it would take to work, but the migraine cycle I was in at that moment broke pretty quickly, and I have been 100% migraine-free for the last month, which is so amazing and never happens.

    I was due for the next injection last night (interestingly, I was having a mild headache, but not a full-blown migraine) – – but went to take out my injector to let it warm to room temp, and noticed that the freeze indicator that had been shipped with it was red, indicating not to use it. I called Aimovig and they will replace it next week, but here is the question I was wondering if you knew anything about: so, the injectors that have come directly from the Katz and Pharmacy have all had both a heat and freeze indicator in them, so I know it has not been exposed to any cold or heat out of the “OK“ range – – such as was the case with this one. (Note that every dose I’ve gotten I have immediately received and put in my refrigerator.) But interestingly, the ones I am now getting from my local pharmacy have no indicator cards in them, so I have no way to know if those are really OK or not. I called the pharmacist as well as Aimovig, and nobody seems to know anything about this, or how I would know if the ones I get from the local pharmacy and refrigerate that have been right by the others I got by mail are OK or not. I asked Aimovig what would happen if I used it and it in fact had been exposed to cold temperatures that would indicate a cold temp that would indicate but it should not be used, but they had no answers, even transferring me to a pharmacist. So here’s my dilemma: the one I have now I have no way to know if it really is OK or not. I sure wish all of the boxes came with those two indicator cards! I think that is strange that even the manufacturer does not have the ability to say what would happen if I used it and it actually had been exposed to temperature that was too cold. I guess I am going to find out, but this makes me very nervous, because just as you mentioned, there are such rigorous temperature guidelines for this medication.

    A few quick notes having read your wonderful blog post… First, at least now, Aimovig can be completely free for most people, especially if they do have commercial insurance and it is denied. I believe from when you posted this, which is when I first started also in their program, things have changed a little. But yes, it would otherwise be cost-prohibitive for most people. I also just wanted to mention that you had said once it is out of the refrigerator you have 30 minutes to use it. I believe it is true that you cannot refrigerate it again after it’s been out, but that it actually says in the info that you can store it out of the refrigerator at stable room temperature ( 68 to 77°F) for up to seven days. This might be what you had meant as well.

    Anyway, as a “fellow“ migraineur, I hope you are having success with this as I am! Thank you for sharing some of your experience and story, and please let me know if you might find any information on these heat/cold indicator cards and how to know in the absence of them if the medication is safe to use, assuming it still looks clear and intact. I would sure love to know your thoughts on this!

    Take care!

    • Kelly Lynn Thomas says:

      Hi Lisa! Interesting! My Aimovig has never come with an indicator card. I checked my most recent dose, the new 140 ml all-in-one dose, and it doesn’t have an indicator card, either. As far as I know, as long as the medication is clear it should be fine. And you’re correct, you can store Aimovig for up to 7 days at room temperature. I find that I usually get a mild reaction at the reaction site (and the needle hurts like a mofo going in, but as you said, it’s nothing comparing to having a migraine 24/7!), but so far it’s been working really really well for me. I feel like I have my life back!

What do you think?

This site uses Akismet to reduce spam. Learn how your comment data is processed.