February 22, 2019
If you have tried any of the new CGRP medications (Aimovig, Ajovy or Emgality) have you experienced any side effects? If so, which treatment have you tried or are you taking? What side effects have you experienced?
How many doses did you or have you taken? Do you recall what dosage amount?
Please share your feedback & experiences with our community! If you'd like to explore what some of our members have already shared (both positive and negative), be sure to take a look at our forum page which you can find here.
March 13, 2019
I have taken 3 doses of 140 MG each. Not only has the medication not worked yet, but the side effects are disturbing. When they say that one of the worst side effects is constipation, they are not kidding.
You probably don't want to hear the entire story, but let me just say the day that I finally got things moving again, I spent about 8 hours or so just dedicated to that entire process.
I also had some cramping of my thigh muscles, although those were not horrible, just annoying.
My neurologist tells me that it can take up to 6 months to take effect for Aimovig.
The really great thing is that he is not putting all of his eggs in one basket. If this doesn't work, then he has a plan to try something else. He is only a year or two out of residency, and is very intelligent, and very optimistic. I have never had a neurologist like that before. And I have not been able to find a neurologist who would even take me anymore, since I have already been to all of them around here, and they have given up.
June 18, 2020
I am so happy for those who have gained relief from Emgality or Aimovig!
I have suffered from headaches a debilitating migraines for 30 years. My neurologist has told me that my particular situation is due to all the accidents/trauma that I had as a kid/teenager/young adult to may face, head, and mouth (bike accident at 6 years old - slid on face after going down big hill and knocked out teeth + concussion, bike nose 4 times, many head injuries in sports + concussions, and falls/accidents, and lots of stress). Because I had so much trauma to these nerves (trigeminal nerve), I often get stuck in this migraine pain cycle.
I had periods in my life (stressful times) when I had more migraines - so many that they interfered with my quality of life (QOL) When this happened, I took preventative migraine meds (ie, antidepressant, sleeping pill, propranolol, and imitrex to stop the migraine)- LOL - those prescribed by the neurologist.
I have been in a period where my migraines are affecting my life significantly. I have been having about 22-24 headaches and about 16-18 migraines per month for the past 8 years. My neurologist has me on the following meds: Trokendi XR 50mg every night, Tizanidine 4mg 1 tablet in the am, at lunch, and at bedtime. My psychiatrist has me on the following meds: propranolol 20 mg in the am and 20 mg at bedtime, Celexa 20mg at bedtime, Lunesta 3mg at bedtime, Klonopin 0.5mg as needed (no more than 1 tablet a day). My neurologist prescribed Emgality in October 2019. I took the initial loading doses (2 injections) in mid-Oct 2019. I was originally ONLY prescribed 100mg oral Imitrex as this worked - 1 tab or 2 tabs if the migraine was very bad, but I did NOT need any other additional migraine abortive meds until I started on Emgality. The changes/side effects were gradual and had been not yet outweighed the benefits...until possibly now. I am still trying to trace these events/side effects. I think it will be impossible.
So, Emgality worked great and worked right away. Yes, the shots are briefly painful. I am unable to inject myself so I ask my husband to do the injections. And, he loves it! The first 3 months (Oct, Nov, and Dec 2019: I only had 5-6 migraines and 2 or 3 mild headaches. The only side effect that I noticed was constipation, but my psychiatrist had also changed my antidepressant in August 2019 (why I am not really sure now that I look back) from Celexa to Trintellix, which is a new to the market antidepressant that can cause nausea, vomiting, and constipation. So, I did not connect Emgality to the constipation. Dec 2019 was very stressful because of work of travels (etc.) I experienced my very first 5-day long migraine that required me to go in and see my neurologist for an injection of Toradol and Phenergan. I went straight home and slept for 2 days - luckily, I was able to push this until late Friday afternoon. The length and intensity of the migraine in Dec 2019 (2 months after my loading dose of Emgality) was worse than anything I have ever experienced. I still did not make a connection.
Jan, Feb, and Mar 2019 I took my Emgality doses as prescribed. I continued to have bad constipation = only resolved with stool softner, and new side effects of nausea and vomiting showed up. However, I thought this was Trintellix. I worked with my psychiatrist to down titrate of this antidepressant and re-start Celexa. The nausea and vomiting improved, but not the constipation. I had NO headaches at all these months. But, I did have 1 period of 5-day migraines each of these months. The migraines were so severe that 100mg Imitrex did NOT even touch the pain. My neurologist prescribed: prednisone (steroids) for 5 days and the following abortive treatment, s to be used in step-wise fashion: Zomig, Migranal, Imitrex shot, and Compazine as well as Voltaren.
In April 2019, I took my Emgality shot. This month I had the GI side effects (nausea, vomiting, and constipation) and an 8-day migraine. I tried all of the medications listed above including another dose of steroids. I was about to receive an injection of Imitrex from my adult daughter when I passed out on the side of the bathtub. She called the EMS, who took me to the ER because I had low BP (70/53) I stayed in the ER until my migraine resolved and until I was hydrated and my BP returned to normal. They had 2 give me 2 more doses of IV Compazine in the ER. I had very low BP for an entire week and passed out constantly. Was the low BP related to Emgality or Compazine?
May 2019, I took my dose of Emgality as prescribed. I only had 3 migraines and NO long periods of migraines, but the migraines I did have were incredibly intense and required Compazine to resolve. This led to low BP for a week. I passed out and sprained my ankle (going to orthopedist on Monday) and then my BP bounced high (never had high BP) with the highest reading at 278/132. BP bounced low and high for days and I re-injured my foot/ankle. I see the cardiologist tomorrow for the BP issue. Is the BP something my body is doing OR is it due to Emgality OR Compazine.
I have been so happy to have fewer migraine days that I have NOT looked at the possible side effects for MY body and I have
not yet truly considered the intensity of my migraines. Please note that my migraines have been/are so painful and so consuming that I am still considering taking Emgality and I would still recommend trying this medication if the benefits outweigh the risks for other migraine sufferers.
I wish you all well and good health!
March 13, 2019
I've taken 3 doses. 140mgs ea. It seems to have made my vertigo worse. Much worse. And I've had significant trouble moving my bowles. Also, it seems it has increased my blood pressure which increases my dizzy spells. I'm being told to hang in there. It's the acclimation process. But I don't think I can handle much more.
March 15, 2019
I would think LONG and HARD before you inject yourself again..I started off GREAT with AIMOVIG and now, once again, migraine abs a medication, had robbed me of my life 🙁
I'm glad you have a doctor you trust and seems willing to keep trying..in my experience with chronic migraine (40+years YIKES) doctors do give up on you...it has happened far too often...right now I'm at another dead end. My post is above..please take a moment to read..I have reported my adverse side effects to amgen and the FDA..I wish all the awful things I've read here and other websites written by fellow migraine sufferers using these new CPRG injections report their side effects so maybe others will research more before jumping on the vand wagon to start something so new...this happened to me with topomax...it was on the market only a few months..not even..before I tried it..worked great until it didn't.
Thanks for listening..Janet
March 13, 2019
I have taken 2 doses of Ajovy and have felt much, much worse. After the 2nd dose I had an red spot the size of the palm of my hand in less than 24 hours. It was hot and it ached. It took 2 weeks before it started fading and looked like I had the measles. I have had daily auras, vertigo, dizzy episodes, often several times a day. My head also started throbbing right after the first injection and has continued throbbing. It never throbbed before. I just couldn't make myself take the 3rd dose. My neurologist suggested I wait a couple more weeks and then try again saying it sometimes takes 3-4 doses before you notice relief. Right after that appointment I had an appointment with my primary care doctor with fasting blood tests. My thyroid levels were out of whack, my triglycerides had doubled, my entire metabolic panel was awful. He said I was a metabolic disaster. I'd had the same tests done in early December prior to the first dose of Ajovy and the results were fine. The only change between then and now is the Ajovy. I go back for another set of lab tests in a month and hope that things are back to normal. I can only assume at this point that the Ajovy is the cause. And while Ajovy is not supposed to cause constipation, for me it does. At this point I doubt I will be doing another injection.
March 14, 2019
I'm saddened by the wonderful start I had with AIMOVIG (last July ...140mg) to me developing AWFUL side effects beginning last December and up until today .
The feelings of fatigue, nausea, insomnia ..tingling sensation running down both my legs..break through migraines that began this past January with aura ( which I hadn't had in over a decade, aura I mean)..and vertigo which prior to AIMOVIG maybe I experienced a couple times in the 40+ years I've suffered chronic migraine.
I've been stuck in my house for 3-1/2 months now due to what I can only assume are the horrid side effects just emerging 3 months ago from AIMOVIG as the culprit.
My heart aches and breaks since I did not experience one ill effect from AIMOVIG...only joy...not one break through migraine for 6 months!!!! Not one triptan!
My neurologist retired last December and his replacement, while very qualified, told me at my appointment last week that I had to BEG for said he doesn't know enough about AIMOVIG or the other cprg injections to help me. He said I need a headache specialist....he said while he has maybe 25 patients on cprg injections vs their expertise with probably hundreds of patients maybe, ( I doubt that) I couldn't believe he didn't offer me anything....we , well I walked out in tears..."I CANT HELP YOU" he said...don't ever tell a patient you can't help them...there's always something...my gosh his credentials and specialities of ailments he treats is quite impressive...I was and still am heart broken....
...well I have horrible insurance (HMO) so I'm on the bottom of any pile there is. There are only 2 headache specialists where I live (Las Vegas) and both have been my doctor. Neither can see me until MAYBE June. Actually one of the doctors receptionist gave me no hope of an appointment. So my current neurologist sent me on my way with NO help WHATSOVER ! 🙁
When I say insomnia I mean NO SLEEP AT ALL! I do fall asleep..awaken about 2 hours later then I'm awake from midnight all through the night.....functioning is impossible and anxiety is at a new high...I have to lay down during the day and crying will eventually get me a 30 to 45 minute nap.
My husband has researched and come up with nothing. He called my primary care physicians office and begged for help...usually it's months to get in there also, but Monday isn't too far away in the scheme of my 3-1/2 months of nightmare.
So now here I sit, after a vestibular migraine Tuesday night...insomnia...I didn't get up yesterday because I couldn't until 5 pm...my husband wanted me to hydrate and eat.
He sat with me until 11pm...got up..the vertigo came back..took a Dramamine less drowsy and did get 3 hours of sleep....today is postdrome and I'm on the couch writing my story...one I thought I would,never have to write...my March injection day was the 4th and when I see them in the refrigerator I think, gosh..I never thought if they worked from the get go that that would end...how naive ... I'm glad for those who are helped by cprg, but I won't try again....I'm afraid of what my blood work will show...but that's just another bridge I'll be crossing thankfully with a husband who is the only support system I have....all friends and family pretty much dropped by the wayside ..life happens....and for 6 months I had mine back..I just wasn't ready for it to be over.
Best of luck to you all,
March 18, 2019
Thank you so much for your response to my post! I'm sitting in the pcp office now with all my questions. I was up again ALL night after 2 hrs sleep..awake from 1am until I had to get ready for doctor..this is unnerving!.I think I'm having withdrawal from aimovig..the headache specialists I said I was told to go to have been my doctors in the past and have no interest in taking be back 🙁
Since I have hmo I will have to wait even though I told both offices I would pay cash...I'm sad for me since I FINALLY thought I had the miracle prevention medicine that would last..not just 6 months..I'm angry I was stupid enough to continue injecting 2 more months before checking websites to realize I am experiencing what so many others are ...
Thank you again
May 18, 2019
I am so sorry to read your story here. Bless your husband for helping out! I landed in the ICU for 5 weeks after 6 months of infections and compromised immune system while taking Aimovig. Almost died. I will never take a “new to market” drug again. I was so looking forward to these CGRPs but they are not for everyone.