Aimovig: Hi I've been on the Aimovig... - National Migraine...

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Aimovig

Mary1959 profile image
10 Replies

Hi I've been on the Aimovig injections for over a year and although I thought at first, that they helped lessen the bad migran e pain, they now don't seem to help. Has anyone found that changing to a different kind of injection helps? I'm seeing my neurologist on Monday and want to ask about different kinds but not sure if they will change the ones I'm currently on. Thankyou

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Mary1959 profile image
Mary1959
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10 Replies
Cat00 profile image
Cat00

I've tried Aimovig and then Ajovy, I have IBS so couldn't try the others. Sadly neither worked and I am back on Botox. I've had 10 rounds of botox now so they're stopping that and want me to try one of the newer CGRP's that don't stay in your body as long, I think like Rimegepant. But I'm afraid I haven't tried it yet so I can't give you any feedback..

Mary1959 profile image
Mary1959 in reply toCat00

Thankyou for your reply, I'll give anything a try, if it improves the migranes. When I was put on the injections, I was so hopeful they would work, but sadly not. Hope you find relief from the new kind when you try them.

Cat00 profile image
Cat00 in reply toMary1959

I've been chronic for over 30 years now so it's very hard for meds to really have much impact. You learn to live with it, they ebb and flow on their own. Interventions never seem to dent the frequency but I do think even the treatments that seem to not work still lesson the severity so they're still worth pursuing. Good luck!

Roonie22 profile image
Roonie22 in reply toCat00

Cat00, do you find that Botox helps with the daily headaches? I am currently trying Aquipta (atogepant), which is having some positive effects but not what I was hoping for. I was wondering if Botox as well as Aquipta might help.

Also, I haven’t tried the cgrp injections as I was concerned about it staying in my system for a long time if I had side effects. Which is why I’m now trying Aquipta. I think this might be one of the drugs you’re thinking of trying. I have to say, I’ve been having digestive issues as a side effect. I have never had digestive issues before. I am currently managing them with omeprazole, fybogel and gaviscon. It may be more of an issue for you, but as it’s a tablet, at least it’s out of your system quickly if there are side effects.

Cat00 profile image
Cat00 in reply toRoonie22

I've always wanted to try CGRP at the same time as Botox but could never get the funding for that on the NHS. They said I could get the Botox privately and they'd still give me the CGRP but that was the only way.My biggest fear with the CGRP is that I developed Bladder Pain Syndrome after being on the injections for two years. We don't know if it was the CGRP that caused it, I took myself off the contraceptive pill aswell incase it was that too. I spent 4 years of not being able to sleep longer than 45 minutes without having to wee, I completely lost my marbles. I have many other chronic pain conditions, I couldn't cope.

I suspect Botox is good for daily headaches but it's hard to tell to be honest! The CGRPs definitely make IBS worse. When I first went on them I had loads of trouble, I met someone else on this forum that had the same. We were both told categorically by our neurologists that it wasn't the CGRP. But they've changed their tume now and there is wide recognition that CGRP can interfer with the bowel.

Roonie22 profile image
Roonie22 in reply toCat00

I’m having to get Aquipta privately as it’s not available on the NHS trust that I’m in yet. That’s kind of why I was wondering about Botox too, as I could get that on NHS, at the same time as Aquipta privately.

Aquipta is a CGRP but taken daily so not as much of a commitment as the injections!

I really feel for you. I’ve had chronic migraine for 3 years, much less time than you, but it really feels never ending. I haven’t found anything that helps yet.

Wishing you lots of luck finding something that helps.

Cat00 profile image
Cat00 in reply toRoonie22

Personally I'd say go for it with the Botox, generally only had good experiences with it!

Mary1959 profile image
Mary1959

Thankyou, I've had them similar amount of time, but thought as I got older, they would lessen, like my mum's did, but they haven't. I celebrate any day that's migraine free, sadly they are few and far between. Take care

AFNRanger profile image
AFNRanger

I’ve had pretty good luck with Qulipta as a daily preventative and Ubrelvy as an abortive for any breakthrough migraines. It’s not 100% but it has lessened them quite a bit. Side effects have mainly been dizziness.

Mary1959 profile image
Mary1959 in reply toAFNRanger

Thankyou for you're reply, I'll check it out.

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