Emgality

By jacqui-g

2 min read

I'd like this to be a record of my experience on Emgality.

On February 1st, 2020 I took my 1st dose of Emgality. Immediately I had a strong burning sensation at the injection site. I was not alarmed by this because it was stated in the literature that this can be a side effect. The next morning however I experienced some of the worst panic I've ever had followed with a bout of depression and extreme nausea to the point where I dry heaved in a bathroom for at least a 1/2 an hour.

The neverending migraine nightmare

This horrible nightmare continued every day I would either have terrible bouts of depression with or without crying. Or I would have extreme panic to the point of being in primal fear/fight or flight. This continued for the next 2 weeks.

Hairloss can it get any worse?

Around that time I also noticed extreme hair loss happening. It was more than just stress and as I read through chat rooms and other states where people were comparing side effects I noticed that this was also a common one. The 2 weeks that followed were filled with more extreme anxiety/panic windows Of Time, bouts of depression with crying. Many nights I had insomnia and horrific nightmares. Racing heartbeat continued night after night as well as some hours during the day. The most I can compare this to is having an adrenaline shot and having to go through the next 40 to 50 plus days feeling like that adrenalin surging through your body. I am not trying to scare anyone but please proceed with caution if you are thinking about taking this medication.

Things that have helped

I can tell you the things that helped were having someone there to tell me everything was going to be ok and that it was temporary. Having reassurance and hugs helped a ton. Eat as healthy as possible. Drink lots of fluid and get outside. Breathing fresh air, leave windows open. Most importantly, try not to be alone. I will leave an update in a few more weeks. FYI right now I am out almost the 6-week mark. Sorry, I talked to text this... I will come back to edit.

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Allyson.Ellis Community Admin
Oh my goodness, Jax G, I hear what an awful time you have had with Emgality. It is so scary when your body and emotions feel so out of control. I'm glad you had friends and loved ones to walk through these weeks with you, reminding you to breathe, that you are not alone, and that the medication will in time work its way out of your body. Please do check back and update us on how you are managing! I hope your symptoms are beginning to improve! Wishing you a gentle day. ~Allyson (Migraine.com team)
1. Peggy Artman Moderator
 <inline-mention user-id="3809920" username="jax"/> G, I'm so glad you are feeling better. Your symptoms sounded miserable. The CGRP medications are not a "one size fits all" treatment. When symptoms are this bad, I usually recommend reporting these side effects to the manufacturer (Lilly) and the FDA. Here are some links for your reference. I hope you are feeling much better now. ~ Peggy (<a href='https://migraine.com' target='_blank'>Migraine.com</a>) <a href='https://www.emgality.com' target='_blank' rel='noopener noreferrer ugc'>https://www.emgality.com</a> 1-800-FDA-1088 or <a href='https://www.fda.gov/medwatch' target='_blank' rel='noopener noreferrer ugc'>www.fda.gov/medwatch</a>
2. ninibmr Member
 I agree. We need to know side effects before!
jacqui-g Member
Hi Allyson, Thanks for reaching out. So I am at about 8 weeks and finally seeing some relief. I am starting to be more relaxed without all the panic. Rapid heart beat has pretty much subsided. My hair has stopped falling out and insomnia is improving. I feel I'll probably be at 100% in just a few more weeks. I feel strongly that people need to know about what can happen before they inject this medication with such a long half life. The literature and Dr.s do not disclose any of these side effects. I feel that is irresponsible! I hope anyone else who reads this can at least find comfort in knowing it does get better. 8 weeks is a very long time to feel so horrible! Thanks again and I'll update in a few more weeks.
momo56 Member
I have been looking into Emgality to try to see if it will help...after reading this not so sure I will be asking Dr. to try this medication. Thank you.
1. Cheryl Picerno Moderator
 <inline-mention username="terriergal" user-id="3861648"/>, Emgality has been helpful for my husband. It has lessened the pain piece of his attacks. He also uses Nurtec as an abortive, along with a Nerivio device. I hope Emgality works well for you. It makes a big difference when our attacks are under control. The only side effect he experiences is mild constipation, but he also takes magnesium supplements which help with that and control migraine. Keep us posted on how you are doing with Emgality moving forward. Warmly, Cheryl <a href='https://migraine.com' target='_blank'>migraine.com</a> team
2. Holly Harding Moderator & Contributor
 <inline-mention username="terriergal" user-id="3861648"/> So happy to hear that you've found something that is potentially working so well for you. We are keeping our fingers crossed along with you that it is not a fluke! Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team.
MelanieM Community Admin
Hi Jax G, I am sorry to hear how difficult your experience with Emgality has been. I would be interested to hear if anything has changed for you since you posted last? ~Melanie (Migraine.com team member)
1. jacqui-g Member
 Hi Melanie, Yes, I will be posting another update today.
2. jacqui-g Member
 I am also wondering how I can edit my posts? Thanks for any help
jacqui-g Member
This is an emgality update on April 25th 2020 regarding my negative side effects. I am about 13 weeks out after taking my first dose February 1, 2020. The anxiety is getting better, however, I still have an extreme fear of being alone. The bouts of crying are very minimal, but I must note that when I woke up and cried right away, it was a way to decompress a bit. I still have depression that was not there before. The burning/tingling has fir the most part subsided. Brain fog is still present. Racing heart seems to be gone and there is no longer shortness of breath. I will say that I am still experiencing anxiety in a way that I was not prior to this med. It is better and less frequent, yet when it comes on it comes hard and fast and unfortunately I react to it before I can process it. My hair and eyelashes have stopped falling out. The bloating is getting better and I'm sleeping a couple hours more each night. Light at the end of the tunnel. I'll update again sometime in May. Hope this can help someone. Be Well, J ☮
1. terriergal Member
 <inline-mention username="jacqui-g" user-id="3805043"/> did you ever get any feedback from a doctor on your strong reaction? that sounds like some kind of auto immune crisis . i hope you've gotten some better options since.
ninibmr Member
I'm sooo sorry, Jax. It's so frustrating that in the midst of already distressing, painful headaches that all this would happen as well. I hope you're body will be now move past this reaction. Hoping for better days for you!
jacqui-g Member
Thank you for the kind words. It's definitely getting better and better.
alialley Member
I’ve been taking Emgality since January. I’ve now had 6 doses, I can say I did gain a little weight maybe 5lbs. Nothing too drastic, but I’m already over weight so that wasn’t surprising to me. I have a little bit of irritation from injecting every month. I put it on my stomach where I have very little feeling because I have nerve damage from 3 c sections and a ovary and tumor removal. So I don’t feel much other then maybe tenderness from my jeans rubbing. I know many people have had severe side effects. I suffered from migraines 90% of the time a month, and when I didn’t have a migraine I had a headache. My headaches have Dulled slightly and I can say yes I still have more migraines then most people but I can treat them. I would go get shots and even then they wouldn’t go away. With emgality my migraines can be treated. Well to my thoughts of treated. Right now we are trying several medications for treating them when they come on. So far we haven’t found one. I’ve tried even newer medications. I can get the tolerable with two of the pills then 1600mg of ibuprofen.. obviously that isn’t healthy, so we are still trying. I understand emgality isn’t for everyone. But even if I was having symptoms I don’t think I would notice them compared to the migraines I was having. I was having serious cognitive loss from my migraines. I still suffer now. But I was miserable. I’m sorry emgality didn’t work for you. Maybe something else will 
1. jacqui-g Member
 Thank you for the input. Yes, it seems to work for some people w/out the side effects, but for me it was a nightmare. I'm glad you are having success and I wish you a migraine-free future.
alialley Member
Oh I’d like to also note I’ve suffered from extreme depression from the age of 13, so I was already on high doses of anti depressants maybe that’s why I didn’t have the emotional issues