Why I Was A CGRP Holdout And What Finally Wore Me Down
So why did I not jump in immediately with both feet? I have been in chronic pain for most of my life and have tried pretty much everything. After years of chronic pain already under my belt, I was the fourteen year old kid on a plane to Canada to try the first triptan, Imitrex, before it had been approved in the US. So naturally, family and friends have wondered what’s with all the feet dragging now??
After years of countless medications and horrific side effects, I have some pretty serious baggage around new medications. I have been following the progress of these CGRP meds for several years now, and while the short term side effect profile looks very benign, no one knows what the long term holds.
I have read articles about the role CGRP plays across many different body systems and the indications that could have for the future. Yes, CGRP is released around the brain during migraine attacks causing inflammation and pain to sufferers. The ability to block that protein could seem like a no-brainer...sign me up! Except for the fact that you aren’t JUST blocking it in relationship to migraines. CGRP receptors are found all throughout the body suggesting that the protein may modulate a variety of physiological functions in ALL major body systems. By blocking it to theoretically ease my migraines, I am blocking it from playing its necessary role in my respiratory, endocrine, gastrointestinal, immune and cardiovascular system also. I’m not so sure I am ok with that since no one can say exactly what that could mean for my future. There is NO long term data at this time.
So what made me cave and reluctantly inject my first dose? I met with my new team of doctors and voiced all my concerns. The doctor said, “You are absolutely right and I agree with you one hundred percent.” But she went on to ask if I was able to LIVE right now? If I give this a few months and it doesn’t work, we move on, and at least I will know. If it does work, then I can weigh that against the possibility of some risk for my future. I’ve had those thoughts too and I can’t really argue with that logic.
It still feels like an impossible choice.
I lose many days to unspeakable pain. The days that I function, I do so with great struggle. It impacts my family enormously. My kids miss me, my husband has to take off work too often, my friends and neighbors get frantic texts to please help with the kids as I lay in bed violently vomiting and screaming in pain. We routinely look at the option of moving somewhere less expensive so Kit can go back to teaching and have the same hours as the kids so we won’t feel like we are in crisis so much of the time. No, I am not able to really live now. And I need to be here for this.
But the future...
Kit and I talk and dream of the life we will have one day, when we have made it to the other side of this beautiful but challenging season of raising little humans. We foresee a future of traveling together, exploring the world, eating delicious food, taking in live music, adventuring together hand in hand until our bodies wear out and we leave this world to explore the next.
Oh how sweet that time together will be. I want to be here for that as much as I need to be here for this.
Impossible choice.
So now I wait. I wait to see if it is a choice I will even have to make. Honestly I’m not even sure what I’m rooting for. With so many mixed feelings, I’ll do the only thing I know how to and place my trust in God’s plans for me...for US.
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