An Aimovig Success Story
I don't know about you, but I personally have been reading a lot of stories of less-than-miraculous results from Aimovig (the first CGRP antagonist medication approved by the FDA) since its release in June, including my own story of unexpected pain and side effects. However, I do have a friend whose response to the medication has been so positive as to be life changing. I spoke with Sharon via email recently about her experience in order to share it with all of you. Her answers have been slightly edited for length.
E: Tell us a little bit about yourself, aside from migraine. Approximate age, location, family, job, interests, whatever you are comfortable sharing.
S: My name is Sharon and I am 42 years old. I live in Eastern NC. I married my childhood sweetheart, David, and have been married for 21 years. We have one son named Elijah who just turned 16, and four cats that we adore. I attended a local liberal arts college on full scholarship and then went to Duke University for my master’s degree. Through a series of events, my husband’s career took off and mine tanked, so I became a stay at home mom in 2007 when my son was 5 years old.
I love music, books, and scrapbooking and I am involved in politics as a precinct chairperson, working to increase voter education and turnout. I am passionate about social justice issues, fighting racism, women’s rights, and helping the poor.
Sharon's migraine diagnosis journey
S: I was diagnosed with migraine in May of 2015. Until April of 2015, I rarely had headaches at all and they easily responded to Advil. I tried several options to rule out other problems before seeing my primary for headache including an eye exam and chiropractic care. My primary diagnosed migraine, and referred me to a neurologist. I had to wait 6 months for that appointment. In the meantime, I used OTC meds and narcotic pain relievers prescribed by urgent care. I was unaware of MOH and found myself in a horrible rebound cycle by September. The neuro made me go cold turkey off all meds for 30 days to break the cycle.
At this point, I tried Topamax which made me suicidal within 2 weeks and I had to abandon it for my safety. Then we tried Verapamil. I used Imitrex as an abortive. Nothing worked. I was chronic daily from the outset. I tried acupuncture, massage, more chiropractic care, herbal supplements, heat, ice, etc. Nothing helped at all.
Next, I did two rounds of Botox and my condition became worse. Eventually I ended up in the hospital for a week on DHE. It stopped the migraine pain but caused severe side effects and the migraine came back as soon as I was being driven home. Next I tried Gabapentin, which helped the pain quite a bit but made me insane. I was ready to get a divorce and I cried all the time. I was an absolute nut case. I had to abandon it, and within a week I was feeling normal again. At this point, I was told there was nothing that could be done except to “deal with it."
"People avoided me as if migraines were contagious"
E: While all this was going on, what was the rest of your life like?
S: Before Aimovig I had reached a truly hopeless place. From the outset my migraines were so severe that I missed out on family vacations and became nearly homebound. I started missing my son’s events at school. I stopped attending larger sporting events that we had always attended as a family since my husband and I were married. I missed family birthday parties and holiday gatherings. I was as alone as alone could be. People avoided me as if migraines were contagious.
My depression spiraled out of control because withdrawing from life was the worst thing I could do. During this time, I was also finally diagnosed with solar urticaria which is a fancy name for being allergic to the sun. Between light triggered migraines, migraines that escalated with light exposure, and solar urticaria, my house became progressively darker and I avoided going out in the daytime as much as possible. Hats and sunglasses were not enough protection.
I researched the disease and fielded a million well meaning god awful suggestions for “cures.” When my neuro told me there was nothing more they could do for me and they had given up and passed me off to another neuro with a 6 month wait time, I sat and cried on a bench outside their office building. The new neuro told me I was going to have to learn to live with the pain because I (me, not him, not other doctors, not science, not the entire medical community) had failed all available treatments. He sent me packing with nothing. I completely gave up at this point and once again became suicidal.
Learning about Aimovig and CGRPs
E: That’s awful Sharon. I was friends with you during this time, and have had similar experiences myself, and it still hurts me to read what you went through. Your story is harrowing.
When did you first hear about the CGRP medications being developed? Did you have hope they might help you, or did you just feel resignation that it would be one more treatment to “fail”? When you heard Aimovig was FDA approved earlier than expected what was your reaction?
S: I heard about Aimovig in 2017 through online support groups. I have a close friend who works at Amgen who filled me in on a few minor details. I had a LOT of hope. I had to keep hoping or give up altogether.
The night we heard it was approved, David and I sat on the couch holding hands and cried in gratitude. I was so thankful because at the time my neuro had given up on me and told me that I had failed at all treatments. He blamed me. I didn’t fail. The treatments failed.
Getting Aimovig prescribed
E: I reacted to the FDA approval very similarly. How soon were you able to start trying Aimovig? What type of doctor prescribed it, and did you have any issues receiving it from your pharmacy or with insurance coverage?
S: It was prescribed by the nurse practitioner during an existing appointment I had planned. She was very encouraging. It took about three weeks to hear from the Ally program. They were extremely nice and proactive in helping me. About a week later I was approved and they scheduled a shipment from the specialty pharmacy. I took photos of the auto injector when it came and posted it on Facebook to celebrate with all my friends who’ve been supporting me.
About two months later my insurance called and had fully approved Aimovig.
Aimovig's effect on migraine attacks
E: How soon after your first dose did you notice a change? Did you feel like you were having any side effects?
S: I had an immediate improvement. I had severe constipation, but it was easily treated and managed.
The summer was magical and I enjoyed vacations and became much more social. People had physical reactions to my change in appearance. I look totally different when I’m not in constant pain.
E: You mentioned in a previous conversation with me that you had a pretty bad month when the hurricanes came through. Were you able to stay positive and feel like it was from your typical Carolina fall weather and that things would improve again?
S: In August we began having regular thunderstorms that occur down south. My migraines returned for about 30 straight days until we got through hurricane Florence. Then I got better. It was scary because I thought it was failing. I panicked and bawled and had suicidal thoughts because I knew I could not go back to daily migraines. I had to see my psych to get stable and hold on until the pain was managed again. The neurologist was a huge jerk during this difficult time. The NP is amazing and compassionate but her boss is a JERK.
E: I'm so glad for you that after that bad month you got better. That must have been so scary. How many “headache days” are you having now? How has your life changed?
S: I have 2-3 headache days per week compared to a migraine every day. They respond much better to my abortives than before Aimovig.
My life has changed because now I smile. I go out. I do fun things. I bought a new wardrobe. I bought new jewelry and makeup. I’m hosting parties at my home. I’ve traveled for vacation and to visit friends. I have a life again. I love it.
Have you checked out the new Community Hub yet?