Willing CGRP Guinea Pigs
One of our community members recently posted the following comment regarding taking one of the new CGRP treatments: “You, others and I who are risking taking these injections are going to help so many other people if all is favorable…I do not care about the side-effects or possible long term consequences (if there are any). I have taken the injections for 9 months and feel fine. There are a few side-effects but nothing like being disabled with crippling migraine.”
Is trying a new treatment worth the potential risks?
This begs the question: If you are taking one of the CGRP treatments and experiencing a positive result, is that payoff of relief worth risking any potential long term repercussions the drugs may pose?
Of course, these drugs were studied in clinical trials prior to coming to market. However, now that these medications are released and widely available, there’s no research yet regarding their long-term use. Therefore, we each must come to terms with whether or not we are comfortable knowingly and willingly taking a medication that may or may not have an unknown repercussion down the line.
Potential gain of trying a CGRP treatment
As to whether or not the payoff is worth the risk, that answer is a personal one. Because there are so few effective migraine treatments available, there has been a rush of patients eager to try the CGRPs. Many are desperately seeking relief. And, the CGRP’s ARE providing many with relief. Some with marked relief. Indeed, in some cases, migraine attack frequency is decreasing by half or more. Others are feeling pain-free windows in their days when they otherwise felt some level of pain 24 hours a day.
For these people, tasting relief is like waking up from a deep slumber. It leaves them giddy with energy they haven’t felt for years. Says one community member: “I am quietly very optimistic… it’s a very strange place to be. I need to learn to live differently because my mind and body is clear from brain fog/pain etc. for the first time in years. Tell me about being hyper – I can’t stop running and doing things. I talk constantly – I’m mega organized. My ironing and housework is done. I GET BORED… never had that before…May it long continue ? I am happy…”
For some, it may be that experiencing that kind of turnaround means that returning to a life with the lights off, curtains drawn, in the fetal position, watching life go by from the sidelines may no longer feel like an option. And for them, the risk is worth it.
Making peace with a personal decision
But, of course, we absolutely do have a choice. Many people are choosing not to experiment with new medications due to potential long term risk. And that is, of course, their right. It can feel like (and it ultimately could be) a major gamble. We may be trading one complex chronic health condition for another equally or more serious challenges down the line. It is a personal decision and one with which we each must feel comfortable enough to proceed as the stakes are potentially high. Life with migraine is hard and certainly doesn’t give many easy choices or options, however, having a new effective treatment available is at least an improvement.
Are you are taking one of the CGRPs and getting relief? Is that relief worth any potential long-term risk that might come from these medications? Or, are you too busy celebrating whatever relief you are experiencing to be thinking about this?
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