My Experience with the CGRP Migraine Vaccine

After two years, two migraine specialists, three rounds of Botox, seven trigger point injections, four eastern medicine practitioners, dozens of lifestyle changes, and too many medications to count, my neurologist told me I was out of options. Despite our best efforts my chronic migraines refused to be managed. The silver lining, according to my doctor, is that I am young enough to see new developments for migraine treatment within my lifetime – the most promising of which is a migraine antibody currently in development.

Within weeks of receiving this devastating news, I had tracked down a clinical drug trial in my area for the vaccine, and after a ton of research signed myself up. The phase II trial is sponsored by Alder Pharmaceuticals to test the experimental antibody called ALD403. ALD403 is a genetically engineered antibody that targets a small protein called Calcitonin gene-related peptide (CGRP) that is thought to play a crucial role in migraines. Several companies are developing similar CGRP antibodies with the hope that this technology will be nothing short of revolutionary in migraine prevention.

Getting the infusion!
Getting the infusion!

The initial phase I trial for ALD403 found that 60% of patients who received the antibody had a 50% reduction in migraine days, and 32% saw a 75% reduction (compared to the placebo groups at 33% and 9%, respectively). Sixteen percent of patients who received the treatment had absolutely no migraines in the three month period after the dose of ALD403, compared to 0% with the placebo. Even better, there were no significant  adverse side effects reported with the antibody.

Unfortunately, my experience with the ALD403 phase II trial was not as positive as I had hoped. As I write, it has been 11 days since I received an intravenous infusion, and I have had a migraine every single one of those days. Those who have seen improvement with the antibody have seen it almost immediately, so it is safe to assume that this drug trial was not successful in reducing my migraines. However, that does not necessarily mean that I can write off the CGRP antibody, even personally.

The infusion appointment took 7.5 hours. It involved two EKGs, a urine test, multiple blood draws, and cake!

Since the trial is double blind, I will not know until it is over in one year whether I received a dose of the antibody or a placebo. There is a 20% that the infusion I received contained nothing more than sugar water. It is also possible that I received the antibody, but in a dose too small to be effective. One of the goals of this trial is to determine the lowest effective dose, so the trial includes four different doses:  10 mg, 30 mg, 100 mg, and 300 mg. Compare those doses to the 1000 mg dose in the initial trial – that is more than three times the highest dose I could have received!

I am incredibly disappointed that I did not get relief from the infusion. With every failed attempt at managing my migraines, the hope that I will get better dwindles just a little bit more. I am no stranger to failed treatments, and I know that after every failure I need to let myself grieve a little before going back to the drawing board. I still have a lot of hope for the CGRP antibody, and I am keeping it on my radar as I continue my search for an effective treatment.

If you are interested in signing up for a clinical trial:

To learn more about the promising CGRP antibody:

6 thoughts on “My Experience with the CGRP Migraine Vaccine

  1. I was hoping and praying that this would give you relief. I admire your ability to share your journey, so that it may help others. You are such an amazingly strong woman.

    1. Thank you, Auntie Barb! Sharing my experience has been very rewarding. It helps me connect with others going through the same thing, and really helps me process this roller coaster I have found myself on. I miss you! I hope you and the rest of the Nebraskee Glasers are doing well!

      Love,
      Angie

  2. I am so sorry that you have not seen improvement, but I pray that it is only because you were in the placebo group. I would love to see this be another option for you and for all who suffer so desperately!

    1. Your story is very similar to mine. I had my first infusion of ald403 on 9/28/16, the following morning was the first headache free morning that I’ve had in months, placebo affect or the real deal. I hope it’s the real medicine. Today, Saturday, 10/1/16, I have a mild headache, probably from sleeping in and eating late but the impeding doom and gloom of a daily have has passed. I’ll keep you posted.

  3. I am so sorry that you aren’t getting any relief. My heart goes out to you and I think about you constantly. My prayers are with you constantly also. Your picture makes me so lonesome. I miss you.
    Love, Grandma

    1. Thank you so much for all of your support, Grandma. It means a lot to me. It has been a rough several weeks, but I’m hanging in there. I’m so sorry to hear about Mary’s passing. I have been thinking about you, too. I miss you and love you.

      Love,
      Angie

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