I can’t remember what I read, just that I had the feeling that I don’t want to go there. I believe allergic and immune reactions, and I remember reading that the effectiveness can wear off in time. I got the impression it would be tried if all else fails.
That depends on where one lives in the World. In UK NHS certainly, last resort because of excessive cost. Providing one meets the strict criteria (virtually identical in UK and US) it seems to be moving into much more general use in chronic cases in US already even though still a very new drug. I guess there are always autoimmune and hyper allergic reactions to any treatments. They are already showing up with Covid and injections only started this week. Hopefully they will prove extremely rare. I hadn’t read its effectiveness tends to reduce over time so that’s interesting to know. I have seen mentions of the same happening with the oral preventatives too.
Hi Joan, I’m on ajovy and due my 5th injection this weekend. The only side effect is a little swelling at injection site. For me the benefits of it far outweigh this. I also know another person on her 3rd injection and no side effects.
I’m experiencing improvement on it and so is my colleague. I’m also on two oral preventatives that have side effects and would love to scrap them.
I understand your reluctance and wariness but from what I’ve learnt, it’s a very pure form of med and if you are lucky enough to get a chance to try it, I’d encourage you to research more into it.
Reach out if you’ve any questions about it.
Take care
I am on emgality , happy to answer questions
Thank you, Nin. This is helpful. I’ll keep it in mind.
Fifth injection. That’s five months in isn’t it. Well you certainly kept that one to yourself. Oh and am I right guessing Karen, @Mav, is the ‘another person on her 3rd injection’?? If that is the case surely makes quite a strong case for Ajovy as a potential MAV treatment. Really good news. I expect you will remember all the discussions on here about whether or not it might help with other than straight classic migraine and the disappointment there seemed no evidence of it having even been trialled for the variants prior to release. Seems now a few, @Compliant seems another, have been trialling it on the QT. Some feedback would be lovely and maybe a diary update. It really helps anxious newcomers to be able to read how others with similar symptoms to their own and who started out on here in search of help and support eventually experienced some success in gaining control over The Beast with which we are all struggling. Helen
My next job is to update my diary so I’ll try do it in the next few days. No, the colleague is not mav, but a lady I met through my husbands work. Turns out she’s had mav since 2003 and went to see my neurologist based on my experience. It’s such a small world really but it’s great for me to have someone on the journey too with ajovy.
Nothing better than first hand experience. Oh, another one. Seems Ireland must be having a MAV outbreak all its own. Must be much more of it about than generally acknowledged. Looking forward to reading your experience with it. Ireland certainly seems to have a good health service. Helen
Would this be another difference between these new injectables preventative drugs? May I ask.
@nin speaks of her swollen ‘injection site’ which I presume is her arm however having just scanned yet another newspaper article singing the praises of the ‘new’ Fremanezumab I see it’s injected either into the thigh or stomach. I shivered at the latter having heard years ago of the horrors of anti-rabies injections which share the same destination.
It’s the stomach for me and I simply alternate sides each month. Last 2 injections were easier on injection site and much calmer. Body may be adjusting month on month.
And there was me assuming - a very misleading practice obviously - that it would have been your arm. I fancy it even less the more I hear but thanks for putting me right.
Looks as if NICE gave it away with one hand and took it back with the other.
Hello, nin. I will be trying Ajovy in July, but my neurologist left me slightly preoccupied when he said the injections only reduced attack frequency by 30 percent (5 days less if you have 15 days of VM per day, for instance). Was your experience more positive than this?
She has given a very full write up on her ongoing experience in her diary. Start with December 2020 if I were you. Nin’s journey.
I’m surprised your doctor quoted such a low figure. Even the trial data indicated similar ‘success’ levels to oral preventatives which with luck yield 50% however as an observer I can say lots of people on here taking these new drugs seem still to be taking both so maybe they aren’t quite as ‘wonderful’ as first bilked although in fairness we need to best in mind most on here are from the extreme end of the range of sufferers, chronic, complicated etc.
I’m pretty sure, he gave quoted 50% but I think he was looking at me in totality. I’m also on 180mg of propranolol and 150mg of venlafaxine. For the last two months I have had around 22 clear days out of a full calendar month. This is massive progress as 2 years ago, I was lucky to have 2. My biggest challenge remains hormones.
My neuro is keen to get me to 25 days clear per month and he consistently at this. He also plans to reduce venlafaxine. At the minute I have no yearn to reduce anything until I get more consistency and knowing how tough my hormones are, at 49 I don’t think this trigger will fade out quietly.
I have definitely improved with ajovy, and I still got improvement 8 months into my injections. I think it’s worth a shot
I am really happy for you. I hope you continue to improve. Thank you for your reply. If the Ajovy removes even 30 percent of my days, it will be 10 days a month, so that is worth It. If I am Lucky enough to have a 50 percent reduction in days, it will be a dream come true. Well, I will post an update once I have tried it.
Hello again
I have injected my first dose of Ajovy last week and I am now waiting for results. Apparently 37 percent of people have a reduction of 50 percent or more so I am hoping I will be in this minority. Is anyone else trying Ajovy for the first time right now? Any side effects? Any benefits?
I have tried both Ajovy and Aimovig for about 4-5 months each. I am in the category of mild-moderate vertigo a lot of the time, and chronic mild-moderate headaches multiple times a week. My doctor prescribed these more for the chronic headaches than anything else.
The Ajovy gave me extreme anxiety - I had my first ever anxiety attack the day after taking this. I stuck with it, the anxiety leveled but was always there to some extent. The headaches definitely improved. I can’t say I noticed any difference in the amount of vertigo. After a few months, I was getting a lot of breakthrough headaches still and my doctor wanted to try Aimovig instead.
On Aimovig my headaches improved significantly and stayed improved. No difference in the vertigo that I can point to. My anxiety stayed a constant issue and I decided to try to go off this drug and see if my anxiety improved. I also started working with a therapist to see if there were other triggers piling on.
Overall I was doing pretty well on Aimovig headache-wise but the anxiety was making it not worth it. I wanted to enjoy my quality of life.
I hope this helps!
Hi, haven’t been on here for a while as I was pretty much coping and, basically, trying to ignore it all (obviously with no success). I thought, ok this is me, get on with it. Anyway, things started going bad again over a year ago as my medication (Candesartan) was causing postural hypotension, so I had to fiddle with that and try other stuff. None of this worked so I came off it all.
I have recently started with Ajovy injections, just had my second. The first month, I had slightly more bad days. Day 2 after taking it was really bad. I had my second one on Friday and yesterday (Saturday) I suddenly became more dizzy than I have been in years, this lasted all day, and I feel like I have a hangover now.
Is anyone else on this? Does it do this to you? I’m hoping that having had two injections that it will start to work, or am I being delusional?! Should I expect this sort of thing after each injection?
Thanks for any information/advice.