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New Treatment Experiences Part Two: No Happy Ending Yet

Migraine treatments are getting a lot of attention lately. With new options on the market, people in the migraine community have expressed feelings of hope and hesitation. On Migraine.com’s Facebook page, we reposted Holly Baddour’s piece, “CGRPs and Migraine: Navigating Wellness for the First Time in Years.” Her article sparked so many reactions. In a separate Facebook post, we also asked the Migraine.com community if you had talked to your doctor about trying new migraine treatments.

In part 1 of this 3 part series, we shared comments from migraine community members who spoke out about how these new treatment options have been life-changing. Unfortunately, there is no one size fits all when it comes to migraine treatment and some of you have not found relief from trying these new treatments. Here are some comments from those who have yet to find their happy ending.

“The shots are quite painful.”

One downside is the pain of the injections. A few members have mentioned that the injections are uncomfortable and leave a pain that lasts a few days.

“My only issue is that I’m now getting a lump and bruising at the injection site that lasts for days.”

“I recommend icing the injection site for 15 minutes prior to the injection.”

“I wish I had known more before agreeing to the injections.”

Several of you had side effects that made these new medications not worth it. For some, you experienced an increase of migraine attacks after starting this new drug. For others of you, these new medications are causing complications with medications you’re currently taking for other conditions.

“I wish I had known more before agreeing to the injections. By the time I drove home from his office, I had to bury my eyes under a weighted pillow. That is where I spent most of the next five days.”

“I would have preferred no effect. Before CGRP (brand name), I had 14 migraines a month. After two months of CGRP (brand name), now I have 25+ a month.”

“These meds increased fibromyalgia symptoms without positive effects on migraine.”

“CGRP (brand name) caused bad constipation.”

Constipation was a concern brought up by several who tried two of the CGRP brands. Unfortunately, because these drugs are so new, some of the side effects, such as constipation, are only now becoming widely known. That is the risk of trying something new to the market.

“CGRP (brand name) was a miracle drug until I had to go to the bathroom. Seriously, nothing worked. My whole system was so stopped that bending over would cause food to come up. The pain relief was a miracle but the constipation was close to deadly. Took more than a year to recover, still not quite right.”

“My fourth CGRP (brand name) injection is in the fridge but I am done. It hasn’t helped and it caused bad constipation.”

“Medicines that blocked these proteins in mice led to kidney failure.”

Some of the additional side effects may not present themselves until more time has passed and the medicine has built up in people’s systems. One such concern mentioned by a couple of you is potential kidney failure, which happened among mice that were given similar medicines.

“Are patients on the CGRP medications regularly monitored for renal function? Were the participants in the study tested for GFR, creatinine, albumin, metabolic acidosis? When I tried to research this aspect of a CGRP (brand name), it was proprietary. Is the info available now? Medicines that blocked these proteins in mice led to kidney failure.”

“I tried CGRP for three months without success.”

More than a few of you shared that you were able to try the medicine, but didn’t notice any change. You didn’t feel any better or any worse. You then wondered if maybe the drug required more time to have an effect on your body. Granted, everyone’s body will respond differently, so that’s a tough question to answer. But it seems that the majority who did try the drug and had a positive effect noticed its efficacy shortly after starting its course.

“I tried CGRP (brand name) for three months without success. Was that enough time for the drug to work? Will a higher dose improve the results?”

“I have done CGRP (brand name) for three months. The doctor said is it helping. Honestly, I didn’t think so.”

“I tried CGRP (brand name) first, and thought I found a miracle drug. Unfortunately, it only lasted from October to March with no pain. After that the migraines started creeping back in, and then by July, I had to go ER after nine days of a severe migraine.”

“Unfortunately I cannot relate… no effect after five months…”

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Hear more from the community

We want to say thank you to everyone who participated in this conversation. By opening up and talking about these new medicines, we are all helping the community make better-informed decisions moving forward. Thank you.

For more comments from the Migraine.com community, check out the original Facebook posts here and here.

Please stay tuned over the next few weeks for part 3 of this New Treatment Experiences series and feel free to share your own story!

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

  • ninafranco
    2 weeks ago

    I am almost SHOCKED to read that some people have felt pain with the injections. Where are you injecting yourself? Have you tried an alternate site? I have been using Aimovig for about 6 months, two injections a month, that would be 12 injections and I barely/do not feel them. I sort of flatten the skin in the top back- side of my thigh, a little bit back and below of my hip bone and push the button. Since I do two injections I do the same on both legs. Sometimes I feel a tiny pinch, sometimes I feel nothing and I double check the injector to make sure it actually worked. I am a 66 year old woman, not some tough guy, so I can’t help but wonder why the injection would hurt others. My suggestion would be to ask your doctor to do an injection ON you and see if that one hurts. I was nervous the first time I used Aimovig so I asked my neurologist to administer the first one to make sure I knew exactly how to do the injection. Good luck.

  • ninafranco
    1 week ago

    Update. Again, I was shocked to see that some people have trouble with the shots so I decided to pay attention when I injected myself. Today I received my injections. They were in a box with ice packs. I removed the box of injections and left the box of injections on the counter until they warmed up. My doctor told me NOT to inject myself with cold drugs. Could that be a problem? I previously read that the injections can be left at room temp for several days, but I never have left them more than a couple of hours. Several hours hours later I took off my pants, sat down and injected myself in the upper thigh as I said before, one in each thigh. The first injection stung a tiny bit, no worse than maybe a snap with a small rubber band, the second was almost imperceptible. As I said, if your injection hurts more than this maybe consult your physician, you might be doing wrong.

  • ninafranco
    2 weeks ago

    P.S. I have had no bad reactions to Aimovig. I feel the same generally, neither more nor less tired, or achy in the days before and after Aimovig. My insurance would not cover it so I am so grateful that the company is paying. I still get TINY migrainous headaches, but nothing I can’t handle with OTC meds. I have not had a major migraine since starting Aimovig–fingers crossed.

  • April.Sluder moderator
    7 days ago

    Thanks for sharing your experience @ninafranco. April – Migraine.com Team

  • Casper6
    3 weeks ago

    I have heard good and bad about the aimovig. With the co pay card and my doctor suggestion I try it, I did. I wish I never would of. With in 12 hours I broke out in hives. I have never had them like this before. They were all over my body. Was put on predizone. But that was not all, I had stomach pain and gas pressure in my chest around my heart. It would go way with heat and antacids. I also felt like my migraines increased. The rash went away with in a few days with the medication. But the other side effects lasted longer and am still having issues with gas pressure. I did not have this problem before I did the injection. For those it helps I am happy for you. But I am not willing to try any other CGRP type injections. I’ll stay where I’m at. Best wishes to all!

  • BrownT
    3 weeks ago

    Thanks for discussing some of the negative side effects. It seems the company does not want to hear from patients that have side effects. I took Aimovig for 8 months before I gave up on it. I keep hoping that more time would improve the migraines. I was willing to put up with the negative side effects. I found Aimovig helped a little with the pain but severely increased all the other aspects of migraines. I was constantly nauseous, had vertigo, light sensitivity was unmanageable, sounds and odours were overwhelming. I could not function. I never experience all the other aspects of migraine so strongly before. It really helped me understand just how debilitating all aspects of migraine can be.
    Since I have stopped the medication everything settled down again, thank goodness. The company has never touched base to find out why I opted out of their program. I am hopeful that maybe one of the other CGRP may work better if they ever come to Canada. At the same time, I am nervous that the side effects will be overwhelming again.
    I have never heard of a drug or series of drugs that have ignored the negative side effects before. Usually companies want to warn about everything so they will not be liable.
    Thanks everyone.

  • newbattleaxe
    3 weeks ago

    I spent eight worthless months on Aimovig. The injections weren’t so bad, but that’s the only good thing I can say about the drug. I spent 8 months in a brain fog, with increasing vertigo and several bad falls. One fall led to a concussion & 3 knocked-out crowns. I had two trips to the ER during this time, one for what I thought was the mother of all migraines – sinusitis. The other was for an impacted colon. I had absolutely no change in migraine frequency or severity.
    In my fourth month of Ajovy, I’m seeing up to SIX days in a row migraine-free! I haven’t had such freedom in years! These injections hurt more, but to be able to make plans, and be alert & feel safe to drive are worth it all.

  • MelanieM moderator
    3 weeks ago

    newbattleaxe, I am so sorry to hear you had such a bad experience with Aimovig- but I am glad to hear that Ajovy is making such a difference for you, that is fantastic! Thanks for sharing with us. ~Melanie Merritt (Migraine.com team member)

  • Msmmain
    3 weeks ago

    I had a terrible response to both Aimovig and Emgality. The Aimovig caused my migraines to get worse in severity (I was already having 30+ migraines/month) and less than 72 hrs after the 2nd shot I had to go to the ER for an intestinal blockage that started almost immediately after food left my stomach, which the internal medicine specialist had never seen before. My Neurologist switched me to Emgality and I ended up eating next to nothing for nearly 45 days due to how severe the abdominal cramping and vomiting became from it. NEITHER helped my headaches, and ever since then (I stopped taking both in May) I’ve had consistently MUCH worse migraine pain and nausea, and my Doc doesnt know if it’ll ever go back to my old “normal”. I wish I had never heard of these drugs!

  • MelanieM moderator
    3 weeks ago

    Msmmain, I am so sorry to hear how terrible your experience was. I hope that you do see a reduction in your migraine pain and nausea- it sounds like you have been through quite a lot. I hope you have a gentle evening. ~Melanie Merritt (Migraine.com team member)

  • MaddieG
    3 weeks ago

    I had really good luck with Aimovig but my insurance won’t cover it now that the year of copay/insurance assistance is up. So they switched me to Emgality which was a regular syringe the first dose I got and I passed out before I could take it. 2nd dose came and I took it. Now I’m fighting with the insurance because they won’t let me get it filled at the local pharmacy so it has to be mail ordered which is difficult because of the refrigeration. In the last 7 months I’ve had one dose and am pretty much in constant pain. I went a week without a migraine on the Aimovig but now… I’m back to where I started. It’s so frustrating because one would think I should be able to take the medication that worked for me.

  • MelanieM moderator
    3 weeks ago

    MaddieG, I hear your frustration! First and foremost, I wanted to let you know I am prescribed Emgality and it comes in an autoinjector similar to the autoinjector that Aimovig has. I had to switch from Aimovig to Emgality for insurance reasons also (which honestly I don’t understand, because Aimovig sent me something in the mail to renew the assistance program for another year and I filled it out and was approved). But it does appear that Emgality must come in two versions, I wonder if you could request an autoinjector? ~Melanie Merritt (Migraine.com team member)

  • olivetodd
    3 weeks ago

    Thank you for this article. I have been reading the newsletter for the past few years and just suffering silently, with about 15-18 migraines/month. Five years ago, I had to quite my job, because I had a 40 day migraine, and going into an office with computers and fluorescent lighting every day was just not possible. I have been on many daily medications, to no effect, and Botox made pain 10% better for about two years. But mostly nothing helped. Until I was given Sumatriptan injections about 4 years ago. And part of my life was given back to me. However, after all I have read, it seems as if taking these injections 15-18 times/month might not be a great idea for my cardiovascular system. But it’s the only thing that has even remotely helped. When I started reading about the CGRP’s, I contacted my neurologist and started on AIMOVIG back in July (the needle is no more painful than the Sumatriptan injections I have been taking every other day). Now, I am experiencing migraines about 5-7 times/month. Which is a miracle. I have so many of my mornings back, which is incredible. I wonder how long this will last? Yes, there is constipation…but I counter that by taking magnesium citrate, which totally helps. I look forward to hearing more about the CGRP’s and other potential future pain/disease management. Sending good thoughts to all of you out there dealing with this disease! You are so not alone.

  • MelanieM moderator
    3 weeks ago

    olivetodd, I am so glad to hear that both Sumatriptan and Aimovig have made such a difference for you, that is wonderful. Thanks for sharing your hope with us! ~Melanie Merritt (Migraine.com team member)

  • RoseDM
    3 weeks ago

    I started on Emgality a year ago. It cleared my head for the 1st time in over a dozen years. I still get occasional migraines and occasional headaches but at an 80% reduction than before. The shots are very painful (lingering pain for 30 minutes) and initially I had swelling for up to 4 days. Now I take an allergy pill & an anti-inflammatory (Aleve) 10 minutes prior and ice the area before the injection. No swelling or redness and no lingering pain. While the initial injection is still very painful, it diminishes in about 20 seconds. For me, it is so much better than the contant headaches/migraines that I lived with before.

  • MelanieM moderator
    3 weeks ago

    RoseDM, I am so glad Emgality is helping you so much- and thanks for sharing that you have been helped by icing before the injection (I have found that to be helpful as well), and the allergy and anti inflammatory. I am glad that you have a routine that is helping you! ~Melanie Merritt (Migraine.com team member)

  • Ellen H
    4 weeks ago

    Thank you for publishing this list of the miserable side of Ajovy, etc. It is my understanding that TEVA Pharmaceuticals never followed up on the patients who dropped out of the clinical trials. If so, no wonder the drug reps are telling doctors who tell patients that there are no side effects. My doctor said he has 400 patients on Ajovy and I am the only one who experienced the miserable adverse effects. He actually said, “Your body cannot handle medications. I am sorry I asked you to try it.” Thinking of his apology, I am very touched by his words. Where will I go when he retires?

  • Lawrence O moderator
    4 weeks ago

    Hi Ellen! You are most welcome, thank you for your response! We are happy that you found meaning with this article. It sounds as though you and your doctor have a strong relationship. In thinking about his future retirement, I can imagine that this is a scary thought for you! You are right to consider what you will do when that time comes. Finding a new migraine doctor that understands your needs and symptoms is a long process!

    I am sharing with you a link to a recent article from earlier this year that touches on handling your doctor’s retirement: https://migraine.com/?p=107897. We would love to learn more about your thoughts, and I feel that many of our community members can benefit from your advice and input on how you found your current doctor!

    Wishing you a pain-free day! -Lawrence (Migraine.com Team)

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