Real World Stories
By Shoshana Lipson
CGRP Inhibitor Stories
With the emergence of the first of the CGRP inhibitors in May of 2018, and the explosion of information that followed, the need for evidence-based information, support, and access guidance quickly became obvious. CGRP & Migraine Community, a Facebook support group, was started to help meet this need, as well as to give a space where others on this journey could share their experiences. While some of that shared experience can have a ripple effect of fear, it’s important for people to learn from others and to feel less alone. Educating ourselves as well as hearing from others is so essential to help bring balance, give realistic expectations, and provide assistance in knowing how to talk with your doctors about this new frontier in migraine treatment.
My personal CGRP journey
It’s been a rollercoaster since the first CGRP inhibitor hit the pharmacy shelves and I started the long, arduous journey trying to access it. I have lived with migraine since early childhood and ultimately disabled by chronic intractable migraine. This new class of medicines gave me hope. Yet the journey of high hopes has also led to:
- Unending frustration with a system not designed to help those with migraine
- Lack of validation from health care professionals who have been unwilling to hear from patients who are responding differently than those seen in the trials
- Severe side effects from two out of three CGRP inhibitors.
- The need to take a break. I am giving my body a break and waiting for the medications to flush out of my system.
Joy in others’ successes
Success is relative. One person’s goal may be to be able to attend their kids soccer match, others just want to go back to work, while some would be ecstatic if they had 2 days a month pain-free. Through my online support group, I’m in a unique position to watch as others have varying degrees of success and failure as they go through the same process, and there is no way to overstate the impact on the lives of those people who are responding to the new medications. Several members agreed to share how a CGRP inhibitor has shaped their view of success.
“I went from 10-15 migraine days a month to one to three; it has impacted every area of my life,” Cindy said. “I miss less work, am more focused, able to attend social activities, and am more present with my family. I went from a depressed, defeated mom on the couch, to one who is alert, active, and interested in truly living again.”
Donja wrote, “My life has changed so much that I no longer fear the future.” Jenny is delighted that, “I am finally starting to see some of my old self!”
For Kathy, she has noticed that barometric pressure changes do not affect her as they used to. “I can make plans again!” Many others in the group, like Kristy and Sarah, are telling incredible stories, full of gratitude to have support and to finally find something that helps.
Carmella waited three years to get back on a CGRP inhibitor she had found success with in a clinical trial. “I’ve had a 60-70% reduction in migraine attacks with little to no side effects. I have more energy, less fatigue and a clearer mind. This is a life-changing treatment for me, my family, my marriage and my job.”
For many it’s not just the reduction in head pain, but also relief from some of the other incapacitating symptoms of migraine. Abby told me, “The other day I did a math problem in my head! I haven’t done that in years!”
Challenges of a new frontier
As exciting as this new hope may be, it’s essential to bear in mind that with every new frontier comes challenges. As the CGRP inhibitor medications have emerged into real life practice, the maze of information has been confusing and at times contradictory. Most people with migraine are managed by doctors who are not certified headache specialists, and there are discouraging access issues.
Insurance companies are often placing insurmountable access obstacles. Those with government-funded health insurance are restricted from accessing free or copay assistance copay programs from pharmaceutical companies’ dues to federal rules. This leaves some of the most disabled patients without the option of a ground-breaking treatment.
One person wrote, “My doctor’s prescription was overruled by my insurance because I hadn’t ‘failed’ 3 previous treatments even though I experienced huge success in the clinical trials!”
There remains a great need to inform both doctors and patients about the new options available, and to bring about positive change in the insurance industry.
Potential side effects
Outside the controlled boundaries of clinical trials there are many unknowns about responses to the medications since FDA approval. In my closed online support group, many have reported side effects that were not noted as statistically significant in the clinical trials such as arthralgia, nausea and vomiting, fatigue, abdominal pain, bloating and other GI issues, mood changes, worsening migraine, hair loss, unpredictable efficacy changes, and more.
It is important for people who suspect they’re having adverse side effects, especially those requiring a doctor or ER visit, prescription treatment, or having to stop the medication, to make a report to the FDA so that the information can be shared.
Margot, who lived with chronic migraine for over 45 years, saw a 75% decrease in migraine days only to find it started to wear off after several months. “Panic set in – would I lose my new life, my freedom from pain?”
Andreana, who lives with chronic intractable migraine, wrote, “I had to come to terms with the fact the new miracle migraine drug failed me, making me sicker than it helped, and deal with both the physical and emotional fallout from that.”
A new normal
Michelle’s response to a CGRP inhibitor is categorized as being a “super-responder” – she has seen a 75% reduction in the severity of her attacks. She says her “new normal has been overwhelming. Suddenly I had all this time and didn’t know what to do or how to manage it. Plus, it’s challenging to know how to relate to my migraine friends, many of whom are not responding to the medications.”
Hope for the future
Migraine is complex and unpredictable, and the new CGRP inhibitors seem to be the same, especially as we try to determine which “side effects” are causative and which just happen to correlate. However, I’m so very grateful for the surge in migraine research, the many certified headache specialists invested in helping bring relief to those with migraine disease, an incredibly supportive online community, and for the new medications, both those already FDA approved and those still in trials. I’m looking forward to “trying again” and have made a decision to live my life as well as I can in the meantime.
It’s a balancing act. A marathon, not a sprint. Despite my personal struggles of the past year, I’m more hopeful for the future than I have been in a long time. Most of all, I want to encourage all of you who live with migraine disease that you are not alone. No matter how or if you have responded to the new CGRP inhibitor medications, science has just scratched the surface of understanding migraine. This is a time of hope and new possibilities.
Please join the conversation about CGRP inhibitors. Search for “CGRP and Migraine Community” in Facebook and request to join. We’d love to hear about your successes, answer questions, and offer support.
Please consult your doctor about whether trying a CGRP inhibitor medication is right for you.
RESOURCES
CGRP & Migraine Community Group: facebook.com/groups/CGRPandMigraine
CHAMP Financial Resource Guides: headachemigraine.org/cgrp-treatment- financial-assistance-guides/
Migraine Matters: patientadvocate.org/migrainematters/
