By Joanna Bodner Keymaster
By Joanna Bodner Keymaster
I switched to Emgality after 3 months on Aimovig with no relief and the side effects everyone is talking about……fatigue and extreme muscle pain. when I told my doctor about it, she said these side effects were now widely known amongst her and her colleages (sp?). So I took the loading dose of 240 mg (2 120mg injections) on Nov. 7, just two days ago and at this point all I can really report is this
The shots hurt like hell….just momentarily , it’s fine after the injection is complete (we have migraines, we can suck it up, right?)
About two hours after the injection I had an intense wave of sleepiness come over me (like when you taken a pain killer), it was almost bedtime so I went to bed (but regardless of what time it was I would have had to lay down). when I woke up I had no lingering feelings of fatigue and have had none since. And at this point, no reported muscle pain.
I have been in a vicious cycle since the beginning of October and it’s only been two days, so not much relief to speak of, but I certainly didn’t wake up expecting to be cured.
I will continue to post my progress, wish me luck!!!!!!
5days out and still no relief. I am easily at an 8. my eye is throbbing goes around to the base of my skull, my neck and shoulder hurt, my jaw hurts, my teeth hurt, my nose hurts in a sense that I got punched, my ear even hurts. And I get terrible hay fever symptoms so my nose is running, my eyes are tearing up, I’m sneezing. I could only find one other set of reviews for Emgality and one person said they had relief in 2 days. Ugh. Here we go again
Dana curious if you are having. Any success yet with Engality. Looking to switch after 5 months with Aimovig and no effect on daily migraines.
Unfortunately, no. However I have been in a horrible cycle since the beginning of October and my neurologist reminded me these drugs are preventative (which is weird, because the success stories “had relief within days”). I’m actually being admitted to the Thomas Jefferson Headache Clinic tomorrow for their Lidocaine Infusion to try to break the cycle in hopes that after that the Emgality will work to prevent migraines in the future. I should be there approximately 5 days and them am due for my next shot 12/7. Now I’ve been to Jefferson before and left Headache free but was unable to tolerate the preventive they gave me at that time and now less than 6 months later I’m going back. I’m hopeful, but skeptical. But I will keep you posted on my progress. I’d like to know a little about your migraine history because I think that’s important. But I say give it a whirl, what do you have to lose, really? And bonus NO side effects with the Emgality.
My husband just took his third Emgality injection and has had limited impact. His neurologist has mentioned considering the Jeffery clinic. May I ask you if they accept Medicare and health insurance, and if it took you long to be evaluated for admission? Thanks for any info you might share
Jefferson does accept insurance, including Medicare, the problem that sometimes comes into play is if you live out of state. I have put of state Medicaid and my doctor had to prove that I required care that she could not provide in order to get them to pay, and initials it was a visit by visit process. I did have the appointment while my doctor and my insurance battled it out, but getting an appointment does take a few months. You call a number get a voicemail and leave a message. That leaves a bad taste in a lot of people’s mouths because they don’t hear back right away. I left a message everyday for 3 days and got a call in the fourth day. Now, the first appointment is cash only. Yup! $485, your insurance company will not reimburse you, even though they tell you to submit your receipt. This fee is to meet with the psychologist and take a personality test that you never get the results to unless you request them in writing. HOWEVER, they do have treatments that were not available to me where I lived. I don’t know how bad your husbands migraines are or how long he has suffered, but I will say this. I have suffered for 23 years and mine are debilitating and I have not had success with everything they have tried and even had a bad experience, but I don’t, for one second, regret going. I hope that helps. I didn’t want to sugar coat, they aren’t perfect, but I’m still a patient, preparing for my next Hospitalization. Feel free to inbox me if you have more questions
Best of Luck,
Sorry for the delayed response. I hope you are doing better. We have neuro appt tomorrow and it’s time for his 4th Emgality injection. He’s had a few days of relief recently (praise God!) so we are hoping to see continued improvement. He lost his mother early December, and as you might imagine, was in a very bad cycle. We are still considering the clinic. Of course, hoping we won’t need it. I will tell you that after reading some on this forum, he has tried Kratom and that has kept some h/a manageable along with his ketamine spray. The Kratom has helped his fibromyalgia even more! I’m convinced that there is an underlying pain syndrome and all of these things are related. If only we could find the right supplement or whatever to calm those nerve endings. Cold air or sometimes shower water will instantly cause a h/a! Like the nerves are raw and exposed and when irritated, triggers the migraine. Thanks for your feedback!
Oh, Dana, so sorry you’ve been suffering so long. We got married 10 years ago today and the migraines became chronic shortly after we got married so for 10 years. He is on disability which took years to get approved. We are thank for each good day. I’m sure you are too.
I had the two injections (loading dose and first month) on 11/7. When I went without a migraine a week later as a cold front moved through, I was the tiniest bit hopeful that maybe Emgality was already becoming effective. Unfortunately, I’ve had 7 early morning migraine since. My new headache specialist also Rx’d Zomig, but I’ve been reluctant to take it since I don’t know what the side effects will be and I need to be able to get to work.
I don’t know if the stabbing pains in the back of my head are side effects but they began a few days after the initial injections. Also, a true headache in the back of my head has occurred twice and that turns into a migraine that really wears me down, with rubbery legs and fatigue.
My next Emgality injection is due in several days and I will do it. The doc said it can take 2 or 3 months for it to be effective. But she said other patients were reporting positive results within weeks.
I also took my first dose on 11/7, my doctor wasn’t surprised I hadn’t gotten any relief because I was in a vicious cycle, she said we had to break the cycle first, as it was a “preventative” med which was frustrating because people were saying they had gotten immediate relief from Aimovig (which I had failed). So I did a six day inpatient stay a Jefferson Headache Clinic (which also failed) so I’m concerned the second dose due 12/7 won’t help either. I will say I have not had any side effects like you have mentioned, where as I had terrible side effects with Aimovig. Hopefully, your side effects were related to something else…like the weather maybe. I’m curious to see how you do with your second dose please update and I will do the same.
Good Luck 🍀
I had the two load dose injections of Emgality on November 6th, 2018 and yes, they do burn like the dickens for a minute. In the month since, I’ve had many migraines, but I’ve occasionally 2 days between the cessation of one and the beginning of the next one. I have spent a few less days in bed even though I had 16 migraine days. That’s actually a reduction in the number of headache days, I can have 20 or more in a month, and I sometimes have migraines that last 2 solid months, yep, that’s 60 days. I received my second dose (one injection) yesterday, Dec. 6, 2018, and will monitor and mark the calendar when I have migraine days. I’m only slightly hopeful as I’ve been disappointed every single time I’ve tried the “latest, greatest” treatment. Well, perhaps I’m more hopeful than I realize. After all, I’ve only had these headaches for 59 years (I’m 64) and trying treatments since 1993, I reckon I’ll keep on trying.
I decided not to take the second month dose of Emgality for a couple reasons: 1) This is the time of year the cold weather brings some relief for me. I won’t know if Emgality is reducing my migraine flares or if it’s just the the cold and dry air. 2) The lack of safety data is bothering me. I’ve been on PubMed reading the actual research. The study groups were not very big. The researchers from each Rx company are very excited, but this is what this independent doctor, Dr. Loder, has to say, on MedScape”
“Dr Elizabeth Loder
After the EVOLVE-2 presentation, session moderator Elizabeth Loder, MD, chief of the Division of Headache at Brigham and Women’s Hospital, Boston, Massachusetts, asked whether any serious AEs occurred.
Presenter Robert Conley, MD, from Eli Lilly and the University of Maryland School of Medicine, Baltimore, reported that there were two cardiovascular (CV) events: one in the placebo group and one in the 240-mg group “that were resolved” and one non–treatment-related seizure.
“People will be very interested in more information” about possible CV events, Dr Loder later told Medscape Medical News. “A concern with all of these antibodies is long-term safety. Tolerability looks good but safety is important,” especially based on past studies where problems cropped up down the line, she said.
“So we’ll be interested if any safety signals emerge, not just for cardiovascular events but also long-term liver toxicity and things like that.”
Still, Dr Loder applauded the study’s “modest but definite reduction” in MHDs. “The results are consistent for all of these [anti-CGRP] drugs. It’ll be interesting when they’re all available to see how they try to differentiate themselves — hopefully it will be through cost.””
https://www.medscape.com/viewarticle/881657#vp_3 (You’ll need to register to read articles)
I was in the middle of a 6 day migraine and started Emgality,the two shot starter. It has been over two weeks and I have been pain free! Once in the day and another time at night I definitely felt as though I was getting one, but it dissapaited! I am trying not to get excited,after 40 years of pain, but it has been the best two weeks I can remember! I am so afraid this feeling isn’t going to last! I am actually doing things and not dreading it. I feel excited about life. My husband and I would be able to travel! I hope the one shot next month works as well! Oh, no side effects that I know of.
So I’m due for my 3rd injection January 7th. Between my first and second injection I was admitted to Thomas Jefferson’s Headache clinic for their Lidocaine infusion…I was there 6 days and discharged as a “failed treatment” as they were unable to get my pain level under a 6.
After speaking with my local neurologist and the neurologist at Jefferson I have “decided” to continue the Emgality because I haven’t had any side effects from it, unlike the Aimovig which was horrible!
I have been prescribed Ketamine Nasal Spray (which is a compound med, so your insurance won’t pay for and I had a difficult time even finding a compound pharmacy that carried it), so that is currently being filled at $75 a pop and they are talking another hospitalization, this time for a Ketamine infusion. It leaves me wondering why I am still putting another med that doesn’t seem to be working (Emgality) in my body….but for now I want to be able to say I gave everything a fair chance. UGH!!!
Do you think you’ll try again when the weather changes and is “no longer your friend”…so to speak?
So sorry for the delay in replying.
I’m waiting to see what happens in the spring, however, those weird stabbing pains that correlated with my loading doses got worse. On 1/4 and 2/7/2019, both arms went completely weak and I could not use them. I was also getting more stabbing pain and neck pains, not all in the same place. I have a history of spine problems and car accidents so went to a spine specialist after ruling out cardiac or neuro events.
I already knew that my cervical and thoracic spine had 18 disc bulges, stenosis, and desiccation from prior MRIs in 2013 and 2017. The spine doc didn’t need to do a new MRI because he said it it would either be no change or worse. However, he did point out cervical kyphosis and asked if I had migraines, headaches, dizziness, etc, which, of course, I do. He thinks most of my migraines are cervicogenic due to the kyphosis and nerve root stenosis. I have trouble finding a comfortable position to sleep in and get very little sleep. He Rx’d a newer muscle relaxant, tizanine, which isn’t as sedating as Flexeril. I’ve never slept better, and I only take it 2 or 3 x a week. I’m also doing neck exercises to undo the kyphosis. The stabbing pains are mostly gone. The only “migraine” I had was after a particularly physically demanding day at work. I have to be very careful about stooping and flexing my head back, like you would if you were checking for a leak under the kitchen sink or looking under the bed. I didn’t get some slight neck pain under control and it escalated into a migraine.
That migraine was an eye-opener. I took sumatriptan and it helped, but it really made me feel tired and depressed. My PCP wanted to treat me for depression last summer but I had an inkling that it was really depression. I think it was the Imitrex. I’m going to see what happens as it gets warmer. I stopped picking up the Emgality and have 3 in the fridge. I have a feeling my migraines stopped with menopause but the spinal arthritis got worse with the lower estrogen, which can be anti-inflammatory.
I hope you’re seeing better outcomes and a lot more progress by now.
Hi Dana and anyone else on Emgality.-
I have been reading your posts since yesterday. Great info thank you. I am a chronic migraineur for 25+ years. I live in the East coast. I have tried every drug cocktail known to man ( my headache Specialist is aware of all the new and old alike). I have seen 2 Neurologists and 2 well known headache specialists in my area. I have tried Botox every 12 weeks at a dose of 150 mg for 2 years. I have also tried
Botox 200mg ( using the full bottle it comes in ) every 10 or 12 weeks x 3-4 years. I also have tried pain management
Re: nerve blocks, meds under anesthesia, and other blocks in my neck area under fluoro guidance with ct scan.
Sorry so long. Nothing ever helped long term. 😏
I return to specialist yesterday for a follow-up. I was hospitalized December 24-29, 2018 with a intractable migraine. DHE IV drip helped, along with nausea meds and Toradol.
So when I returned to my headache Specialist yesterday, he declared The Aimovig I have been on for 7 doses is making my migraines worse. So now we change to Emgality. I didn’t have any major side effects on the Aimovig..I hope that holds true to Emgality. I have been getting 15-25 migraines per month in the last two months. Quite a lonely period.
Thanks for listening and I will keep up my posts of my Emgality adventures.
Gail here again! I had my two starter shots Dec.3,and now my next single dose Jan. 3rd. After 40 years of chronic migraines, I have NOT had one since the first day!! I am starting to trust and am starting to live again…with not so much fear that the shoe will drop again! It is so exciting to makes plans and actually think I will be there! The only side effect, which isn’t much, is the first week after the injection the glands right under my ears ache a little and feel tender. This from a girl who has tried everything under the sun. I will let you know how this next month goes! Especially hoping my new insurance provider that is starting will help pay as the last one ,..my cost was $200.
I’ll start with Gail….Congratulations, I’m so happy that you are getting relief, alittle jealous, but anytime one of us feels better, it’s a win!
beachbumgirl…. I’m sorry to hear you were hospitalized over the holiday (if you celebrate it). I did my 3rd shot this morning. I find the longer you leave it out the less painful it is, so I leave it out an hour instead of 30 minutes. Still no side effects. And although I feel like I’m not getting any relief, my husband pointed out that this past week has been horrendous for me, completely bedridden, oxygen going almost constantly, severe vertigo…etc… and I was coming up due on a shot, so although my migraines are still horrible I must be getting a little relief. My doctor has also put me on Ketamine nasal spray and I go back into the hospital in 2 weeks for a Ketamine Infusion. I’m also on the East Coast, are you North East? I don’t think I’m certainly not getting enough relief from the Emgality to consider it a success, but the docs want me to stay on it as it’s not causing side effects and they’re hoping in conjunction with everything else it will help. So far, not so much….but like I said before I want to give everything a fair shake. Ugh…sorry for being so long winded. Keep me posted. If your up North, I’d love to know who you’re seeing, maybe we could compare notes!
Best of Luck,
Is the Emgality working yet? Any side effects? I’m from the Northeast. Do you get any relief from the Ketamine nasal spray? When I get a migraine that is bad enough and does not respond to my at home treatments ( pr antiemetic, Toradol, and Migranal spray) , the ER doc will use ketamine.
It does help but needs to be used in a small amount, ie
50-100 ml bag or directly in the IV. They tried it in 1000 ml
This last time and it didn’t work as well. I’m hoping the Emgality helps. I hope the Ketamine helps with your next admission. When do you go in? Good luck 🍀
The rules of this forum does not allow us to share email.
Not sure how to share info? Got any ideas?
I’m getting ready to start Emgality. My headache Specialist gave me a savings card while my insurance decides if it’s going to pay for it. It covers 1 year of monthly doses. Talk to your md about one . The company supplies them. You could also call 1-833-EMGALITY to inquire on how to get one.
I hope this saves you and anyone else using this drug some money.
I am so very happy 😃 it is helping your migraines.
Emgality 240mg started last night. I have been in a 8 out of 10 migraine for 3 days. Today is day four and now it’s worse.
I hope this breaks soon.
So I took dose number 4 today and although I don’t feel like I’m seeing a difference, my husband pointed out that a week, week and a half before the next shot is due, I tank HARD!!!! So, maybe it is helping a little and for only a short amount of time, but in conjunction with my Ketamine nasalspray, my other abortive and my muscle relaxers, maybe I’m making a little progress. I’m trying to be positive, so “a little progress” is huge for me 🤗
I got Emgality. Manufacturer gave me a coupon for a year’s worth. My insurance did finally agree to pay for it, but $100 copay. First shot in November, doing February today. Down from 20+ migraines a month to 1-2 – which seem to go away easily with one imitrex. When I was 5 days late taking monthly shot I got 4 days of migraines. No side effects yet that I’m aware of. And yes, the shots hurt!! Mainly I’m suspicious – this seems to be too freaking good to be true. I’ve never had a medication work this well, except a DHE week long i.v. drip, and that was incredibly painful.
I am thinking about starting emgality next month. I am really nervous about not having the botox. I dont get 100 % relief from the botox but I have migraines in some form everyday and it keeps the pain levels down but this past 3 months have been terrible and that is why I am considering emgality. Does anyone get botox and emgality at the same time? Did anyone suffer with the shortness of breath? I already have breathing issues and that worries me. I hate trying new drugs but I am so frustrated with this head. I am new to the headache problem. I didn’t start getting migraines until 2 years ago after my mom passed away. The Doc tells me I have New Daily Persistent headaches. Anyone with that diagnosis try emgality? I have headache 24/7 just different levels of it. The headache is controlling my life. Its so frustrating.
I started Aimovig one month ago and have gone from 3-5 migraines a week to only having 2 in the last month! To me this is a miracle. I am due to take my next shot, but I am afraid to take it. About a week after my first shot I ended up in an ambulance heading to the ER with an SVT and heart rate of 209. The doctors said they didn’t think it had anything to do with the Aimovig, but I have been reading that CGRP is not just brain but in the heart as well. I know I have mitral valve prolapse and have had palpitations in the past, but never as bad as that day. Anyone have or heard of anyone having any problems with heart rate or irregular beats? Wonder if the other meds would do the same or be different.
Have you read through the Aimovig thread? Both the “Have you tried it” and the “Side effects”? While I never had any issues like that (I had others) I read many posts about people having issues with their heart rates and blood pressure. The threads are really long, but I encourage you to go through them.
Best of Luck,
I just started the Emgality with the two injections on Feb. 15. Since then, several weather fronts have gone through as well as a supermoon. (East coast, US) and I have noticed that the migraines I have experienced since the injections have been far less severe. No side effects so far. I am hopeful!
It did hurt like at first, but no residual pain at the injection site. Good advice about leaving it out of the fridge longer for less pain. I’ll try that next time.
My neurologist is sending in the pre-authorization to my insurance now, so I don’t have any info yet as to what it will cost me. I’ll keep you posted…
Txladi here. I’m a 25 year migraine sufferer, having had my first migraine after my younger daughter had colic that kept me up walking the floors for 36 hours straight. They were manageable for years.
They really began to hit me hard after my youngest was born. He will be 17 this August.
I had a pretty good year from 2017-2018, but had them begin again, as job changes, and stress increased. They started up badly again in September 2018.
I’ve been able to break them until now. I’ve had one for 4 weeks, with it ebbing and flowing with the weather, sleep, hormones, and stress. I’ve tried abortives, preventatives, Infusions, chiropractic, and Accupuncture.
My pain management dr backed up my neuro’s suggestion to try Emgality or Aimovig. I’m starting with Emgality, as the Aimovig shows to have side effects that include GI upset/constipation. I have Ulcerative Colitis, so I really don’t need any extra issues in the GI area.
Praying this helps to break this one, and prevent them moving forward. Your words have been very encouraging.
I’m not looking forward to the sting, but it is what it is.
I’ll follow up with how things go in the coming days/weeks.
Today was the second dose… so far so good. I have had far less migraine days in the past month. More stress, though… hubby tore his quad tendon and had surgery yesterday. Insurance has covered the cost, so I have no co-pay. I did leave the injector out of the fridge for a little over an hour, and the sting was far less. Will keep you posted.
Hi everyone and welcome. 🌸
I have intractable migraines. I tried Aimovig and that made my migraines worse. I have taken
Emgality for 3 months. 240 mg for 2 months ( done at my migraine specialist office to see if it would break my 9/10 migraine: it didn’t)
and this month 120mg. Yes, it does sting for 4-5 secs going in ( I just breathe nice and slow: once it’s in, I feel ok) I have had no side effects.
It just hasn’t worked 😔 it hasn’t affected my asthma.
My next step: my specialist referred me to another one about 2 hrs away . My appt. is 3/27. I will see what he has to say. Hopefully he can provide a service that no one has tried yet. ( that’s hard ) Going up very positive.
Migraines have taken so much from me, but not who I am inside and my sense of self. So hard when I deal with daily pain 7-8/10. Not taking pain meds. I have a hold on medical marijuana. Difficult to try something that is not who you are.
Hope everyone is having a 😉 day.
I’m at the end of my 2nd dose of Emgality and debating on whether or not to continue.
Though the actual “ache” of my migraines has lessened under Emgality, I’ve also gained almost 10 pounds in the same time period that I’ve been on it.
This weight gain really frightens me because my weight has never ballooned so quickly like that – even when I fractured my foot and was on daily opioid treatment while being almost fully non-mobile.
I posted a question about it a few weeks ago in the Q&A, not sure if you can search for it and also put it out on FB for discussion….it seems to be happening to A LOT of people. 14lbs. In 5months for me. Try to see if you can find it in the Q&A. Wait I have the link