CGRP Inhibitors and Realistic Expectations
I’ve never quite understood the fatal attraction of rollercoasters! As the mother of three boys, I spent the better part of two decades trying in any way that I could to avoid getting on one of those beautifully gut-wrenching, twisting, heart-stopping monsters! Somehow, it seems to me that trying to manage migraine isn’t so very different. There are ups and downs, twists and turns, some incredible views, but a lot of groaning and longing for the “monster” to end.
A roller coaster of new migraine medications
Never was this more obvious than with the emergence of the new CGRP inhibitor medications in 2018: Aimovig, Ajovy and Emgality. To say that I’m not a huge fan of rollercoasters would be the understatement of the millennium – in fact, I avoid them at all costs. Not surprisingly, the past 12 months’ rollercoaster ride of new migraine medications has not been my favorite experience!
Migraine treatment: a moving target
There are huge challenges faced whenever exploring a new migraine treatment. This is especially true for those of us for whom endless treatments and combinations of treatments have failed… or even worse, added intolerable side effects to complicate an already complex situation. A large part of this is due to migraine essentially being like a constantly moving target! The main challenges, as I see them, are twofold.
- How can we keep hold of realistic expectations when so much hangs on a positive outcome? and…
- How can we keep hope alive when new treatments fail us again and again? Watch out for my next article which talks about this!
Built up excitement for CGRP inhibitors
I still remember clearly the incredible excitement as we got closer and closer to FDA approval for the first CGRP inhibitor in May 2018. Was there really such a thing as a “super responder”? What was the chance of falling into that category? Was the lack of expected side effects truly realistic? What would it take for insurance companies to actually approve the medication? And of course: How quickly was it possible to get hold of this new miracle medication that just may have the ability to transform lives and create a completely new normal?
Managing migraine treatment expectations
Finding myself on this journey with so many others across America and globally, the challenge of balancing realistic expectations together with hope turned out to be a common thread for many of us. As several of my family and friends could attest, my attention wasn’t focused on whether or not one of the new CGRP inhibitors would actually help me. Honestly, of that I had little doubt! Rather, my focus was on how quickly I could get hold of them, how long they would take to work, and, of course, there were the dreams of a new normal. Looking back, it was partly my unrealistic expectations that helped magnify the loops, twists, dips and turns of the ensuing rollercoaster. Excitement followed by frustration, anticipation by fear, and the unexpected quickly followed by failure.
Here are some thoughts that are helping bring me balance; maybe they will help you too.
Setting realistic expectations
- No Cure on the Immediate Horizon: There is no cure for migraine and unlikely to be one anywhere in the near future. That means everything is about management rather than resolution. Focusing on management means not putting all my eggs in one basket. It means a multi-modal approach without expectation of a miracle “cure.”
- A Complex Disease without Easy Answers: Migraine has been described as a “moving target.” There are no easy answers for a disease that is unbelievably complex and unpredictable. In addition, there is no one medication or treatment that works for everyone, and even more, what may work for you at one time may stop working at any point in the future. A realistic expectation would be awareness that this is a trial and error process while having hope that something will hit the sweet spot eventually.
- Research is Slow and Underfunded: Until the 1990s there were no medications designed specifically for abortive migraine treatment (triptans). Subsequently, it took another two decades for FDA approval of the first ever migraine preventive medications (CGRP monoclonal antibodies). Research is slow and dependent on funding which is sorely lacking. Realistically, it is going to be as we raise our voice as a community that this starts to change. And, despite pain, we all have a voice that is valid!
- Limited Physician Education: There is no mandatory education in medical school for headache disorders. In addition, on average there is only one certified headache specialist for every 76,000 people! Realistically, that means a lack of trained physicians on insurance networks, long waits, and short appointments. It means there is a need for us to educate ourselves and partner with our doctors.
- Insurance Challenges: Private and government-funded insurance is often slow to embrace new medications, particularly new genres. It is also still unusual for medical devices to get coverage. However, the squeaky wheel often gets the oil! Learning how to proactively be involved in the appeal process often helps positive outcomes.
If that sounds more discouraging than encouraging to you, then read on!
Understanding the challenges we face helps bring balance as new treatment options become available. It also hopefully provides a launchpad for advocacy. Discovering what we CAN do can be empowering:
- WE CAN explore different options for a multimodal management approach while also considering participating in clinical trials ourselves.
- WE CAN encourage and educate each other in the options that are available, while also helping raise awareness in society in general at the devastating lack of effective, tolerable treatments.
- WE CAN choose to speak out about the desperate need for NIH funding and mandatory medical school education on headache disorders.
- WE CAN become “squeaky wheels” in the much-needed partnership between people with migraine, physicians, and health insurance companies.
In a world where realistic expectations can often seem discouraging, finding ways to empower ourselves is huge. Determining to focus on what can be done, even if it is a small step, can make all the difference in learning to manage migraine.
Do you have unrealistic expectations about treating migraine? How easy/hard is it for you to find your voice and advocate for yourself? For others? What have you found that helps you? What can you do to empower yourself?
Have you taken our Migraine In America Survey yet?