Erenumab and Migraine: What Users Say

• Gre...
• Taken for 1 to 6 months
• April 6, 2021

For Migraine Prevention "I started 1 dose of Aimovig 70 mg in April 2020. My neuro suggested that I should start a higher dose (140 mg) in July 2020. 3 more months after taking this awful stuff, the side effects hit full force! I literally felt like I was going to die. I was so WEAK. Recovery from this drug has been a nightmare. My side effects were brain zaps, anxiety, new panic attacks, paranoia, heart palpitations, numbness, tingling all over my body, weird electrical head sensations, head pressure. My migraines came back 4 months after being off this drug, more debilitating. I also felt like my heart was skipping beats. I experienced shortness of breath, fatigue, neck pain, weakness, burning sensations, weight loss, diarrhea, and vomiting that has lasted for months. Additionally, I experienced ringing in the ears, muscle spasms, and cramps. I want my life back. It has been like this for 5 months, and the drug is supposed to be out of your system in 6 months. Beware and run if anyone offers this! It stopped my headaches, but at what cost? Extreme life-threatening measures?!"

• Che...
• Taken for less than 1 month
• September 28, 2018

For Migraine Prevention "I had my first injection on 9-17-2018. That first day, I had a migraine. I have had a migraine every day since (counting 12). I have also had muscle pains develop in my back to the point that I went in for an MRI 4 days after the shot. I didn’t think or know the two could have been related. I have had back issues before and thought they could have returned. I suspect the medication triggered a flare-up. However, the pain was not only in the injury section but all along my spine, specifically in my upper back and neck. The migraine focused behind my eyes as usual, and my normal medication would not even offer any relief, which is unusual. Then, six days after the injection, stomach issues began. I feel nauseous continuously. I am hungry, but nothing sounds or tastes good. Waiting to see my doctor. Not excited to continue with this medication."

• Sam...
• Taken for 1 to 6 months
• February 26, 2020

For Migraine Prevention "I was told Aimovig had few side effects. I had six shots and migraines worsened! They kept saying give it time so I did, but it never helped. I got health problems I never had before the shots too! I’m 31 and average weight, and the only health issue I had was migraines! Now my chest hurts, I have weird severe fatigue, high blood pressure, and spikes in heart rate, constipation that became blockage and had surgery, depression, diabetes, and can’t digest food right. It’s a suffering I can’t explain really it’s so bad. I’m scared I’ll be like this the rest of my life. I don’t trust doctors anymore and don’t plan to ever go back. They’re either lying to us or don’t know what they’re doing. Never again!"

• Anonymous
• Taken for 6 months to 1 year
• September 21, 2019

For Migraine Prevention "I have been on Aimovig for approximately 10 months. Been a migraine sufferer for 35 years and have tried everything. Although it works for me, I have a severe migraine for the entire week after I give myself the injection. The other side effect I have had is weight gain, approximately 10 lbs in 8 months. I have also been sick twice in 8 months, once with bronchitis and once with pneumonia. Please take note if you have been more susceptible to catching colds, etc. My physician informed me that this drug could make your system weaker, therefore, you will get sick more. Not the drug for me, being I am in the medical field. I will have to go back on Topamax. Good luck, everyone!"

• Mon...
• July 16, 2019

For Migraine Prevention "Had I known... never, ever, ever would I have jabbed this thing into my body. Seemed fine after the shot, 2 days went by and I got a migraine, not too bad. 2 days later, I woke up to a jaw that wouldn’t move and a face on the left I didn’t recognize, it was so swollen. It was hot and incredibly painful! For 3 weeks, I have felt feverish, chills, nauseous, off and on headaches, some migraines. I just need this to be over! I have chronic and episodic migraine with clusters in between. Sure, I’ll be down a day or 2... but this? I don’t even know what this is... pure freaking misery for $600. I don’t think they’ve done enough testing! Will I think normally again? Like ever!?! I’m nervous, it’s all about the greenback, we’re not lab rats, you know? I sleep all the time and my hands shake, I get my words tangled up. I’m telling you it’s AWFUL... a migraine I’m familiar with, a migraine I understand, but this? This is torture. Blessings to all."

• Zoe...
• March 4, 2019

For Migraine Prevention "Been doing 140 mg monthly since May or June 2018. I’m having major side effects. It lumps up like a bubbling pot of water at the injection site, it itches so bad I left bruises on my thighs scratching at it through my pants. Later on in the month, perfectly circular hives pop up at the injection site, driving me nuts. Hair loss so significant my parents noticed the amount of hair in the shower, clogging my drain every week. Muscle aches, muscle spasms. Worse migraines. Much worse. Last one had me screaming my head off. I’ve had migraines for 21 years now. Constipation, weight gain, bloating, depression. I really feel like it’s making me worse. I always end up in a series of migraines during the first week after injections. I’m done. I tried. I know when something isn’t working. I’m an RN, so I know when I have problems with medicine and I’m much more alert to my health and meds than most. This was written during a migraine, so if it doesn’t make sense, sorry."

• Kar...
• Taken for 1 to 6 months
• August 8, 2020

For Migraine Prevention "Right after I took my first injection of Aimovig, and boy was I sick. I got nauseous and had a bad migraine. A few weeks later, I had heart palpitations (which I never had before), and I was so tired I couldn't get up in the morning. The second injection was no better. Same as the first one. Nothing changed. Did anyone test this medicine before it came out? I am no longer taking it. I don't need all of these side effects, and the tiredness is the worst. Will never try a CGRP-R again!"

• Toe...
• Taken for less than 1 month
• May 6, 2019

For Migraine Prevention "I had my first Aimovig injection 6 days ago. The injection itself was not unpleasant, however, within two hours of having received Aimovig, I had extreme dizziness, excruciating chest pain, shortness of breath, hives on my face, rash on my stomach, mouth ulcers, body aches and pains, joint pains, stomach cramps, and leg cramps. Not to mention I have had a migraine since the day of the Aimovig. These side effects have not dissipated in 6 days. Hoping they do soon. I will not be trying the medication in the future. The FDA needs to be made aware of all side effects."

• Ach...
• Taken for less than 1 month
• January 15, 2020

For Migraine Prevention "Side effects have been very bad: lower back pain, cramps, bloating, constipation, fatigue. About a week after taking the injection, I had one of the most severe migraines I've ever experienced. Previously they were cluster headaches, but this was intense pain all around my head, even at the base of my skull. I understand Aimovig has worked for some, but would advise trying all other options first. From what I've read here, many others have also had serious side effects."

• Hop...
• Taken for 1 to 6 months
• September 19, 2018

For Migraine Prevention "I took my third injection of 140 mg on September 4th. My last Botox was in August. I have had a solid migraine since taking the Aimovig. The migraine is not on the right or left of my head, but it is coming up from the back of my neck to the top of my head. I have felt and sounded like I have a bad congested cold, and I have had a urinary tract infection. My energy is zero, I am so fatigued. There are definitely more side effects than constipation, and they need to list them. Constipation is definitely a side effect, but not the only one. I believe the 140 dose was too much. I will definitely go back to 70 mg in October and try that. God bless you all. Praying for all that suffer."

• Dre...
• Taken for 1 to 6 months
• September 8, 2018

For Migraine Prevention "Second month injection was 2 days ago. 1st month, I got very tired, had a lot of muscle spasms, and migraines were daily but not severe. Yesterday, I felt out of it and exhausted, and this morning I was up with diarrhea at 4 and 6 a.m., even though I took Imodium. Now I have a migraine on top of feeling like I have a stomach flu, and every inch of my body aches. I was told by my neurologist, “oh no side effects,” and I expected a miracle. For me, it’s just made everything worse. Very disappointed. Happy for those it helped. I feel like garbage."

• Eve...
• March 7, 2021

For Migraine Prevention "I’ve taken Aimovig for over a year. It was good the first 3 months-then head pains and migraines came back halfway. Had a major migraine treated with Aimovig, nerve block, sumatriptan, and Nubrevly, which only allowed me to get through it-4 days in bed. Then switched to Emgality; did nothing. Now back on Aimovig. I have heart palpitations, constant headache requiring triptan, concentration issues, ringing ears, constipation, bloating, some weight gain, insomnia, sharp head pains in temples and head; need to get off all CGRP. Of course, Amgen doesn’t want to tell you how to stop taking it-guess what they want? Can’t do this anymore!"

• Din...
• December 9, 2019

For Migraine Prevention "I have severe, painful ocular sensitivity to light, which causes nausea and migraine. It is diagnosed as a migraine situation. It began suddenly three years ago and was severely disabling, fluctuating in severity over the three years. No findings on brain MRI or sophisticated eye testing. Cannot read or watch movies without pain, thus constant migraine. Botox worked for six months, then slowly stopped. Started Aimovig 70 mg on August 14th, 2019. I was doubtful as to what was going on when I immediately noticed increased eye sensitivity and pain, worsened and more diverse migraine, leaden fatigue, and a feeling of depression. I looked online and was shocked to read those exact reactions from others. Hair loss? I thought I got away without that side effect and may have for the most part, but it is now starting to shed, which it does not do. It is now going on four months. I have virtually no life. My nervous system has gone whacky, so I can tolerate little outside stimulation."

• Pin...
• Taken for 1 to 6 months
• September 7, 2018

For Migraine Prevention "I've been on Botox for 4 years and decided to try Aimovig. First month (140 mg) injections. The first 7 days, I felt nauseous, lightheaded, extreme fatigue, and hot flashes. I honestly thought I was pregnant. And I also had a 7-day migraine that was awful. I've also experienced the worst menstrual cramps. Not normal for me. It's my 2nd month (140 mg). 3rd day in and I feel nausea, lightheaded, extreme fatigue again. And, 95% of my migraines are on the left side of my head. This time, I've had a 2-day right-headed migraine and 1 sinus migraine, and my teeth hurt. I don't take any onset medication because they don't work for me. In fact, I had more migraines and the intensity was the worst I've had in years. I don't think I will continue on my 3rd month. I'm really sad and mad that this is happening to me. I had high hopes for this medication. But I am glad that some of you are having good experiences with Aimovig."

• Tex...
• August 27, 2018

For Migraine Prevention "I took my 1st injection on 08/17. I gave the 70 mg injection to myself in the stomach with no pain. It did get a little sore for a few hours after, but nothing at injection time. Later that day, I got a migraine that lasted 3 days and also flu-like symptoms. The flu-like symptoms came on first with muscle weakness, fatigue, muscle spasms, and nerve pain. I have since experienced very mild constipation and awful stomach cramps. I had Botox 5 days later, and it helped some. Aimovig was given to use each month to fill in the gaps from Botox. I have daily debilitating migraines averaging 25-30 days per month. I have arterial thoracic outlet syndrome (ATOS) & neurogenic thoracic outlet syndrome (NTOS). I’m very curious if anyone else has this? My first Aimovig was my last one! This medication (that was hyped up to be a migraine miracle cure) is NOT for me. I wanted to put my experience out there for others to see. I feel like there are WAY more side effects yet to be discovered from the use of this medicine."

• Mig...
• July 31, 2019

For Migraine Prevention "I know that it has helped some, but I really wish more research had been done before this came to Canada. I have now been off work for two weeks because of one injection of Aimovig. The side effects have been horrible. I have been in and out of the hospital and doctors' offices, and doctors don't know what to do to reverse the effects (there is nothing they can do) other than wait it out. I took the injection on the 17th, and by the 20th, this turned to my chest hurting and being tight and my throat being extremely sore and trying to close. I have experienced an eleven-day straight worst migraine of my life that, despite IV Toradol and magnesium, will not quit. The body pain, throwing up, dizziness, migraine, and pressure make it impossible to do anything. I also struggle with remembering what I am doing when doing things and have been dropping everything I try to carry. Please do more research before considering this drug for yourself. I now have to worry about finances as I am officially losing wages and out of sick time."

• Ein...
• Taken for 1 to 6 months
• September 22, 2018

For Migraine Prevention "I am 25 and have had migraines of all sorts since I was at least 10. I always knew it had to do with my sinuses because almost always the pain was in my nose/right eye. I finally went to see a neurologist who confirmed I have a deviated septum, but before trying a septoplasty, he told me about Aimovig. On July 11, I began my 2-month trial of two 70 mg doses and would say the number of migraine/headache days was decreased to almost none! I’d usually complain of a migraine about 12-16 times a month, I probably had 1 migraine and maybe 3 mild headaches altogether. I was not approved for Aimovig but was told I qualified for a copay program. Communication from Aimovig is not great, and no one told me until I finally called, so it is now Sept 22, and I am about to take my third dose. The past two weeks, I have had a migraine almost every single day, and I can’t wait for this third dose to hopefully go back to pain-free days!"

• Bab...
• Taken for 1 to 6 months
• August 3, 2019

For Migraine Prevention "Just before my 3rd dose of 70 mg, I experienced days of headaches and a day-long migraine. I had to use a Tylenol & codeine (1/2) tablet. Immediately after the first dose, I had severe constipation, nausea, gagging, abdominal pain, pelvic bone pain, low back pain, and feet that felt like they were trapped in bricks. My lower legs gave out, and I had to resort to using a walker. I have no stamina or desire to do anything. My weight is up 12 lbs in 3 months, feet are so swollen that they are inflexible. My right leg is now 3 inches larger than the left. Daily headaches and tinnitus have overtaken the migraines. Aspirin or NSAIDs help for an hour, then I have to chew on an antacid or two because of acid reflux. NO more Aimovig for me."

• Bab...
• Taken for 1 to 6 months
• August 31, 2018

For Migraine Prevention "I initially tried the 70 mg, which did absolutely nothing. I then tried the 140 mg, and my migraines have become worse in intensity and frequency. It also has played a negative role with my irritable bowel syndrome (IBS). I've been experiencing terrible cramps and also fluctuating between constipation and diarrhea. I had such hope for this drug."

• Alm...
• Taken for 1 to 6 months
• September 1, 2018

For Migraine Prevention "I took my first dose 6/26/18. The shot didn't hurt at all. I did get a migraine the next day, but it takes time to work. I have never made it month to month having leftover Sumatriptan, until now. In the first month, my migraines were less frequent, and when I felt one coming on, I would take Excedrin. That usually did the trick. I just did the third injection the other day, and I feel so much better than I ever have. I have even managed to save my Sumatriptan up, and when I fill my next prescription, I will have a 30-day supply. It has given me my life back."

• Aug...
• Taken for 1 to 6 months
• May 16, 2019

For Migraine Prevention "I took this medicine, 70 mg, for 2 months. The first month and the second month, my migraines have increased incredibly, and I would have the shakes like I had the flu (but no fever), throwing up for a minimum of 8 hours. I had difficulty with leg cramps. I felt more depressive on it as well. I have tried, over the course of my 40-some years with migraines, every medicine out there. I hesitated to take the new drug but felt I should try it because some people were having the best of experiences with it. I am glad that it works for some people, but just beware, you can have bad side effects from this medicine. They don't talk about it on their websites, but I'm telling you that they do occur, and so just be aware of that. This is a brand new drug, and nobody really knows how it's going to affect everyone. I think these websites help people to see what various ones are going through. I will stick with my abortive and just stay in bed. I suffer from chronic migraines, 15 or more a month."

• Jan...
• Taken for less than 1 month
• August 22, 2018

For Migraine Prevention "Took my first dose on 20 Aug, and less than 24 hours later, had one of the worst migraines I've had. It's almost 24 hours after that, and I'm still struggling with it. As soon as the pain pills and muscle relaxants wear off, it's back with a vengeance. I don't know what I'll do if this lasts for an entire month. I would never recommend this injection based on my experience. There's just not enough information out there."

• Eri...
• June 10, 2019

For Migraine Prevention "41 yo. male: 10+ years of static headache with 10-15 spikes per month (blurred vision, tremor, anxiety, intestinal pain, sinus pain). Also T1 diabetic/hypothyroid, so I have really never known the true origin of my headaches. I am 40 days into the treatment on Aimovig 70 mg. Both injections have caused me the worst migraine of my life, where I could not even fake it. Now, this morning, 6 days after injection 2, it is gone and I am clearer than I have been in 11 years. I am hoping that the initial migraines yield to at least a few days of migraine-free days, time will tell. I am at a point where I might be 'okay' with having a really bad headache that lasts almost a week if it gives me clear headache-free days. I am also using less opiates than ever. Now there is at least some hope I can get back to more of my old voracious self. I also now have a numb/painful thigh that is not the site of the injection."

• Lel...
• July 31, 2019

For Migraine Prevention "I took Aimovig in Feb 2019 after not responding to preventive meds, including Botox. I had 2 (70mg) injections. I was nauseated, had heart palpitations, intense itch on feet, and felt like I had the flu after the injection. My migraines got worse from 12-15 monthly to almost daily. Migraines did not respond to triptans, promethazine, or CBD, but abortives worked once Aimovig cleared my system in about 45 days. I had the worst constipation and foul gas - used stool softeners. I got random migraines after avoiding triggers. I had about 4 hours of sleep at night (week 1-2). My hair fell out, and I had to cut my hair (week 2-3). My period became irregular with a 60-day cycle, and it has been irregular since. It appears the trials excluded people who failed most preventives. Did anyone gain weight? 5 pounds of unexplained weight. Other issues include sciatica pain, pain in inner thighs, fatigue, and stinky gas! Does Aimovig increase phosphates in blood? My last test showed elevated phosphates."

• Hea...
• Taken for 1 to 6 months
• December 9, 2021

For Migraine Prevention "I took Aimovig for six months, stopping in July 2019. I suffered severe fatigue, barely could get out of bed. It finally quit December 25, 2019. Great Christmas present! Since then, I have been fine, except for the migraines every 5 days. However, 6 weeks ago, the fatigue began. Once again, it is debilitating. Numerous blood tests, X-rays, and heart tests have shown nothing. Just like when I took Aimovig. Has anyone else suffered these long-term effects?"