Quitting Emgality

By migrainegal

Last Updated:

1 min read

I quit emgality 6 months ago.
I did not take Topamax. My weight was always 120 at the most. I eat a vegan diet and am a runner. Emgality didn’t cure my migraines but my weight increased to 145, I only took two doses for two months .. Nov 2019 I didn’t take my dose. I am now running a mile every day and am on a liquid diet of one smoothie a day and diet pills.

Weight gain from Emgality

I weighed myself today and I’m at 145. I skip dinners and lunches and supplement with miso soups. At my neurologist's office, I weighed in at 150. I used to have perfect blood levels before Emgality. I was told I had nothing to worry about. Now I’m pre-diabetic at 121 glucose and a failing kidney. I’m also suffering from rheumatoid arthritis. I walk with a crutch.
Is this coincidental? Prior to Emgality, I did yoga, running, and ate 3 times a day, now I take pain pills and force myself to run with a brace on my foot...

I can’t fit into any of my clothes,
I’ve isolated myself from embarrassment from my weight. I’m 5 foot 4.

I’m thinking about donating blood to get this poison out of my system...

Maybe it’s permanent metabolism damage.

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Lawrence Community Admin

Hi Migrainegal! I feel your dissapointment and frustration. Making the decision to try a new medication is hard enough. Let alone having to deal with the unwanted migraine symptoms and a side effect that is making you feel awful about yourself. Hang in there, and continue to reach out to your medical provider, and maintain the healthy lifestyle that you wrote about. floor yoga, and low impact exercises like swimming have really helped me stay off of my feet and I hope that you are able to incorporate them in your routine. Wishing you healing hugs, and a speedy return to the lifestyle that you love. Here is a link to our sister site Rheumatoid Arthritis for you to also get connected with others who can share their examples of RA friendly diets and exercises: <a href='https://rheumatoidarthritis.net/video/breathing-exercises/' target='_blank' rel='noopener noreferrer ugc'>https://rheumatoidarthritis.net/video/breathing-exercises/</a>. -Lawrence (Migraine.com Team)
monica111 Member

I feel like I wrote most of this bc the story is so similar! I exercise everyday and the scale keeps going up. I’m scared at this point bc it doesn’t make sense. How are you now?
1. MelanieM Community Admin
 
 Hi Monica111, while you are waiting for migrainegal to reply, I wanted to stop and thank you for taking the time to comment. I am sorry to hear you are experiencing weight gain as a side effect, I know how frustrating that is! ~Melanie (Migraine.com team member)
leslielayne77 Member

I'm so sorry, I 100% feel your pain. I've been on it for 3 months and I'm quitting now, I'm due for a dose in 2 days. My neurologist doesn't believe me that there are side effects, she looked me straight in the eye and said there's no way emgality is causing your weight gain, hair loss or, cardiac issues or terrible pain in joints. Since I started Emgality, I've started to have episodes sometimes twice a week where I suddenly with no warning get vertigo and pass out. She had recommended they take my driver's license (even though nothing bad happened) because of these episodes. Yet, will not even consider that I'm experiencing side effects that only occurred since I've started injections. I was recently admitted to an epilepsy unit at the hospital to try to discover what these episodes are, which was a god-awful experience so I ended my stay after 3 days instead of a week. I don't have epilepsy, it's the emgality!!! Regardless, I'm stopping immediately. And after a couple of months if I don't have an episode at least I know 100% it was the damn injections. I reported my side effects to everyone I can. On a personal note, the weight gain has been devastating, all of my clothing is now tight ,uncomfortable and unflattering. I can't afford to purchase a new wardrobe, so I will have to work hard to lose it. I truly feel this medication is dangerous for some. Yet the drug company does not indicate side effects other than injection site reaction. We have to be our own advocates when our voices are not heard. I can only hope stopping this medication will help me get my life back. The irony, it works for migraines for me but took everything else away from me. Hang in there, we will make it through this.
1. Allyson.Ellis Community Admin
 
 Oh goodness, Leslielayne77, what a lot you have endured since beginning Emgality. It is so frustrating when a new treatment helps the migraine symptoms, but the side effects are too severe to continue. I hear how discouraging it feels to have your neurologist refuse to listen or consider that these new symptoms could be a result of the Emgality. Within this community, you are certainly not alone in your experience! I'm glad you are reporting your side effects. Have you included the FDA Medwatch (<a href='https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program/reporting-serious-problems-fda' target='_blank' rel='noopener noreferrer ugc'>https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program/reporting-serious-problems-fda</a>) in those places you are reporting to? Please keep us posted on how you feel as you come off Emgality. Thank you for joining the conversation. Wishing you a gentle afternoon. ~Allyson (Migraine.com team)
opalusionist Member

<inline-mention user-id="3870663" username="migrainegal"/> I am so sorry to hear the side effects you have had due to Emgality. It is shocking to hear such severe effects from a drug that I am sure you had high hopes for. I, myself, was hopeful with this medication when so many other treatments and meds, even stimulator surgiers (x3) have failed me. You have really been put through the ringer with this med, as if you needed that on top of chronic illness. I wanted to share with you some side effects I had from Emgality. I always feel like I am in that 1% of people with any meds that I am taking. My Neurologist looked at me like I was crazy when I told him the first month I was having side effects other than what was listed ("injection site irritation"). He acted like any other side effects would be impossible and in my head. What is wrong with doctors? ! I talked to the specialty to pharmacist about it and they told me to report the side effects because it is such a new drug that all the side effects raen't listed yet. That kinda scared me a bit. I realized then that I am a test subject. Did I really want to be that? I have so many DX already and did I want any more to add to the list. I have been on for 4 months and due for my 5th shot. This shot has helped my migraines like no other med (however, I have to stay with my Botox and also stay taking tons of other meds including Trokendi XR). So, it didn't take away that need. Negative already. Then the list of side effects for me have been shocking. Can't sleep/insomnia Hair loss that is significant. Dry itchy scalp and skin. Dermatitis type spots on elbows, feet, shins, and hands. Increased LPR/Gerds BY A LOT. I have a HISTORY OF “respiratory-reflux” caused by my current medications. The LPR affects my asthma and vice versa. Constipation-have had due to other meds but is worse now and have had to double up on herbs and meds to combat this. Painful bloating. Weight gain. wasn't sure at first because my lack of motivation and energy may also contribute to this. Brain fog/ fatigue and low mood, apathy, lack of motivation. Nosebleeds often. Hormone issues: Periods are worse- hormones have been off-balance (including nipple discharge- and cysts in breasts have been worse than I have had) Very painful and can't hug anyone. Interacted with LDN. Lowered dosage to .5mg .It helped but was still an issue. Causing my muscle spasms to get worse, not better. Needless to say I am late ordering that 5th shot by a week and probably WILL NOT do it. Due to COVID I hvaen't been able to go in for medical procedures that usually treat GON pain so neualgia is running my life right now and it tempts me to take that shot. YES it did get rid of nerve pain that has only ever been taken away by my neuro modulation device. That is until my scar tissue kept breaking the lead wires. Sigh. will there ever be an answer that is NATURAL? I've been hopeful and not found it yet but won't stop looking so that the side effects are not an issue. I wish you the very best in your journey and I am so hoping that some of these things which have come about due to the shot will heal. Our bodies are amazing machines even though they can malfuntionin amazing ways too. My heart goes out to you. Love, light and healing to you.
1. Allyson.Ellis Community Admin
 
 Oh my goodness, what a lot you have endured with migraine and nerve pain, Opalusionist. I hear how frustrating it feels when doctors do not listen or consider that a new medication may have more side effects than those initially listed as being the most common from the drug trials. I'm glad you are reporting your side effects as that will help to ensure as time goes on the warnings accurately reflect the experiences of Emgality after being disbursed to a larger population. The COVID-19 pandemic is definitely creating challenges with access to treatments. You are not alone having a delay to a regular treatment due to the virus. I hope you will be able to treat the nerve pain before too long! That is miserable. Thank you for sharing your experience with us. Please keep us posted on how you are managing. Wishing you a gentle day. ~Allyson (Migraine.com team)
dianefox Member

I have not had any side effects from Emgality. We are all so different
1. Allyson.Ellis Community Admin
 
 That is so very true, Diane! All bodies are unique and respond differently to various treatments. I'm glad you have had such a positive response to Emgality! Thank you for joining the conversation. Wishing you a gentle day. ~Allyson (Migraine.com team)
dinamay Member

Did you not get the large insert page with your medication? I took Emgality for several months last year and with every dose I received a very large sheet of thin paper, printed on both sides, that told about this medication in excruciating detail. I get this kind of insert with every medication I take and I make a point of reading it at least once. There is always a great long list of possible side effects. There is also a place to contact if you have side effects not listed on the sheet. If you don’t automatically get this insert at the pharmacy, I recommend you ask for it. It’s always good to know what to look out for when trying new medication. You may not experience any of the side effects but if you do, it sure helps to know what the cause is. As long as I have your ear, I’ll make one more recommendation. If your doctor can’t listen to you, then maybe it’s time for you to look for another doctor. I wish you the best.
dogmama1 Member

I am experiencing VERY similar problems from Ajovy. I started Ajovy in Jan 2020 and took my last injection May 14th. I have gained 25 lbs. I am eating next to nothing, exercising, etc. I have never weighed over 120 lbs in my life, and the only change was Ajovy. I don't know what to do at this point. Any suggestions are greatly appreciated.
Jennifer 8888 Member

This is heart wrenching I have been on it for about 18 months or more have gained 40lbs and my Dr said the same that it can’t be the shot . I walk 3 miles 5 days a week and eat good and still can not loose this weight . Im now definitely thinking it’s the shot after reading this . I did take topamax and Botox before this and stayed my normal weight 
1. Nancy Harris Bonk Member
 
 <inline-mention username="Jennifer 8888" user-id="4740575"/> I'm sorry you are dealing with this issues, you are not alone! As much as we don't like to disagree with doctors, I'm afraid this one may be missing the mark. You can read more from others who have gone through a similar situation; <a href='https://migraine.com/forums/side-effects-emgality' target='_blank'>https://migraine.com/forums/side-effects-emgality</a>. And more here; <a href='https://migraine.com/living-migraine/one-year-emgality-review' target='_blank'>https://migraine.com/living-migraine/one-year-emgality-review</a>. Let me know what you think! Nancy Harris Bonk, Patient Leader/Moderator <a href='https://migraine.com' target='_blank'>Migraine.com</a> Team
LLLovingMom Member

I experienced extreme weight gain on Ajovy. 40lbs in 2 months. I notified my neurologist and told him I was stopping the injections. I've since started qulipta and have had no adverse reaction. 
1. Holly Harding Member
 
 My goodness, <inline-mention username="LLLovingMom" user-id="8775054"/> - That is a significant weight gain in a short amount of time. The CGRP drugs (like Ajovy) seem to cause different side effects in different people. Did Ajovy work for you? I'm hoping Qulipta is effective and glad it's not causing any side effects. Thanks for sharing this with us. Warmly- Holly <a href='https://-migraine.com' target='_blank' rel='noopener noreferrer ugc'>-migraine.com</a> team