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Guinea Pig looking at the viewer in a circle made out of a syringe

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?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • TashaJD
    1 month ago

    Has anyone else tried Aimovig 70 twice a month instead of the 140 once a month?

    My neuorologist started me on Aimovig 70 when it first became available. It worked the first couple of months but then started to let my migraine break
    through before the next shot. He uped my dosage to 140. Two 70 shots instead of one each month. That worked for a couple months then break through happened again. He told me to try 1 shot every 2 weeks instead. It was working wonderfully! Then insurance company decided I could only get a 140 instead of two 70s. My neuorologist even tried to talk to them and still no go. Now I’m back to having 2 weeks pain free then here comes the migraine. 2 weeks of predrome, headache and postdrome!

  • Holly Harding Baddour moderator author
    1 month ago

    Hi @tashajd – That is a fascinating case study in trying a different way to use Aimovig. Sounds like the insurance company has some catching up to do with the doctor (no news there).

    I encourage you to post what you shared above to two different locations on our site in order to get more community feedback. One place would be on our Q&A page where many questions on various topics are posed for dialogue and discussion between members: https://migraine.com/q-and-a/.

    And the other would be to either read through or post your question on the forum we have that is dedicated to the topic of Aimovig: https://migraine.com/topic/tried-newly-approved-aimovig-share-experience/. You might find some answers there.

    Hope that helps. Thanks so much for sharing your experience. Please keep in touch and glad you’re with us.

  • DinaMay
    2 months ago

    I’m having better success with Emgality than I did with Aimovig. But either one is way better than spending days in bed with a towel over my head to keep out the light. So far the side effects have been quite tolerable. I’m sure there will be more down the road. But I’ll be thrilled if I can manage to continue taking Emgality long enough to find out what those other side effects are. Medicare is in my immediate future and how that’s going to work is what keeps me up at night.

  • Holly Harding Baddour moderator author
    1 month ago

    DinaMay- I appreciate and relate to all that you said. I, too, have had better success with Emgality over Aimovig with minimal side effects. And though I have some fear over long term repercussions of these new treatments, it’s difficult to worry too much as regaining quality of life is priceless. The fears surrounding paying for these treatments are universal- whether or not its related to Medicare or one of the many insurance companies that is not quick to cover them now that the savings programs are expiring- the fear is there and is real. The thought of a vast improvement in quality of life being whisked away due to cost is definitely enough to lose sleep over.

    https://migraine.com/living-migraine/cost-wellness-affording-cgrps/

    There are many of us with you on all of this. Thank you for chiming in.

  • tucker
    2 months ago

    I tried Aimovig for about a year or so. It did help a bit for a few months but then the effects wore off after about 3 weeks. I also had terrible constipation after experimenting with different doses and types of magnesium for years to avoid diarrhea. I wasn’t too eager to double the dose.

    My PCP and friends who were using other products thought I should try one of the other ones but my neurologist just switched back to Botox. I’m not sure how I feel about that either since I had used it for 10+ years and it had stopped working though I did take about a 2 year break. I’m about 3 weeks in from those shots and just getting over terrible neck stiffness.

    Recently a coworker who was on Ajovy for about 6 months stopped it when her neurologist kept rescheduling her appts and she fired him. We had this very same discussion of the unknowns of this medication. She is just treating her migraines as they come since topamax makes her lose weight and her PCP is not really well versed in other migraine preventatives.

  • Holly Harding Baddour moderator author
    2 months ago

    Thanks so much for sharing your experiences with the CGRPs so far. Many people have reported GI issues. I understand your hesitancy regarding trying other kinds of CGRPs due to the side effects your experienced, for sure.

    Is the Botox working for you to decrease either the frequency or severity of your migraine disease now that the neck stiffness has cleared?

    Hope you’ll stay in touch about your journey. It’s helpful for us to hear how others are approaching solutions- the ups and downs, stumbles and successes. So helpful to learn from one another.

  • mjva
    2 months ago

    A very limited number of us will finally be able to test Aimovig here in France as it is being offered as a test to a few dozen Guinea-pigs. This is the last West European country where it is not yet available to the public. Because Viagra invariably triggers a migraine, I wonder if the effect is different with CGRP’s ; can anyone shed a light on this ? Thanks.

  • Holly Harding Baddour moderator author
    2 months ago

    Hi there- are you asking if the CGRP treatment would block the impact of a viagra-triggered migraine? I’m unclear about the answer to this question and was unable to find any research or comments that address this topic. I’m certain others have had the same question, however. If you are open to doing so, you might pose this question on our Q&A page where more people from our community will see it and you’ll be more likely to have a better chance of more people responding than here in the comment section of another article.

    Here’s where to post your questions: https://migraine.com/q-and-a/. Thanks so much for your question and for being a part of our community!

  • Anne
    2 months ago

    I’m on Aimovig – it hasn’t been a miracle cure for me, but it has helped me to stop using blood pressure drugs as a preventative.Blood pressure medication caused me a lot of fatigue and Aimovig does not. That’s another factor to consider – the long term consequences of the other preventative medications people use. I think of it as inflammation is extremely damaging to the body – when I’m having a migraine, everything is inflamed. I’d rather have more freedom from pain and inflammation than live in fear of what could potentially happen. I’m getting quality of life now.

  • Holly Harding Baddour moderator author
    2 months ago

    Anne- what an excellent point you raise. While we may be risking unknown side effects from long-term use of the CGRPs, these treatments are frequently helping us to decrease the use of other medications that have known and troubling side effects with long-term use. So, yes- very valid and strong point there. Thanks for sharing!

  • lindaann
    2 months ago

    I have been on Aimovig for almost 12 months. While it has not been a miracle for me, it has reduced my full on migraines from 2 to 3 a week to 4 to 5 a month. I still have a daily headache, so I still live with chronic pain. Some changes I have noticed is that I can more often sleep off what seems to be a migraine coming on and I don’t get 4 -5 days in a row of migraine anymore. My partner says I have more energy and I notice this as well. I guess at 61, I am not too concerned about long-term consequences but maybe I should be.

  • Holly Harding Baddour moderator author
    2 months ago

    Sounds like a dramatic turnaround in terms of frequency. So glad to hear that news for you. And yes, no doubt your energy has increased in response to not having to constantly fight that severe pain and related symptoms. I think many are echoing the sense that they can’t really be worried about long-term potential effects when quality of life is so improved in the present. Hope that daily headache might be able to get addressed at some point as well. I’m in the same boat as you as far as that’s concerned. Thanks for sharing and please stay in touch!

  • CMS2019
    2 months ago

    Hey I’m glad others have not experienced side effects and are getting relief.
    I did get marked relief. It was great. But the trade off was that I couldn’t eat (gastroparesis) and couldn’t sleep (bad insomnia).
    It took 4 months for the Aimovig to leave my system and I can sleep without ambien. My stomach is still messed up but it’s getting better.
    But the headaches are back. Last month I had 10. I can handle it. I have for years. At least I can eat more than a half a potato in a day.

  • Holly Harding Baddour moderator author
    2 months ago

    My goodness, so sorry to hear about those very troublesome side effects and how awful to learn of that lengthy shelf-life of having to wait for it to clear your system. I love your “I can deal with it” attitude. Demonstrates how long you’ve been living with migraine and the fortitude and strength that so often accompanies a life with chronic pain. Glad you’re able to eat a more varied diet with no repercussions!

    You probably have no interest in doing so, but have you considered trying one of the other CGRPs? Although in the same family of drugs, many people are having quite different responses to the various options (Emgality, Ajovy, Aimovig). I imagine after finally flushing your system of the side effects you were just dealing with, your in no hurry to on-board another!

    Thanks so much for chiming in- hope you’ll stay in touch.

  • CLCL
    2 months ago

    I am an Aimovig success story. I went from having 3-4 migraines per week, to 1-2 per month. I’ve been using Aimovig for 14 months. I do have concerns about long term implications, but honestly, my quality of life had gone so far downhill (could never plan anything, missed so much with family and friends, etc.) that I feel like I have no choice but to take the risk. I no longer feel anxious when I wake up, wondering if my day will be spent alone, in a dark room.

  • Esme
    2 months ago

    I have responded well to Aimovig, but have been concerned about the long-term effects for quite awhile. I will begin increasing the interval between doses in hopes of eventually tapering off completely. I wonder if we all really need to be taking this every 30 days or if a longer interval is adequate for some or many of us.

  • Holly Harding Baddour moderator author
    2 months ago

    Great question, Esme. Good for you for thinking carefully about this. Have you engaged with your doctor about this idea of frequency between injections? And of course we are all different so it would follow that our responses to meds would be different as well. Please keep in touch about what you learn in your process.

  • vsurdel
    2 months ago

    I am one of the happy patients that has gotten almost complete relief with Emgality. I’ve thought about long-term effects, but at 59 and having had 3-7 migraines per week, it’s a risk I’m willing to take. I’ve had no side effects yet that I know of.

  • Holly Harding Baddour moderator author
    2 months ago

    Hi @vsurdel– You raise such a good point. If the therapy is dramatically working for you- and turning your life around from experiencing migraine almost (if not) every single day, it is a risk many of us are willing to take. Thanks for chiming in.

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