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.
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?
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.