Break in aimovig

[Susannagrout]

I was on aimovig for two years before my neurologist said I needed to stop taking it for a while to see how I got on. Within 9 months my migraines had returned and I went back on it. 18 months later, I’m required to have another break in treatment. Has anybody else had this and what has been your experience? Thanks for any comments.

[Cat00]

This is the problem I've had for 10 years, as soon as something starts working they take md off it. With me I deteriorate quicker than you within a couple of months. This happened with Botox and the CGRP. I really don't know why they still do this as I always get worse.

[Susannagrout in reply to Cat00]

It’s very upsetting and worrying isn’t it? So hard to manage your life because as soon as you’re off the medication symptoms return and life is put on hold. It’s horrible.

[Cat00 in reply to Susannagrout]

It's so predictable too, I've never not got worse after been taken off these things. Usually the break then makes the treatment not work right and it takes 9 months to get back to where I was. I wish we could stay on things for a few years at least. We couldn't get the CGRP working again so I was put back on Botox, I'd be due my 4th round soon. It's only just started working properly this round just gone so naturally I'm worried they're going to take me off it again.

[Mary1959]

Do they take you off it, to give your body a break or is it because it's expensive? I'm hoping to get it prescribed when I see the neurologist next week

[Susannagrout in reply to Mary1959]

Neurologist says to give my body a break but I suspect it’s a combination of the two 🤷‍♀️. I’ve read the NICE guidelines and there’s no mention of taking a break which is why I’ve asked this forum.

[Mary1959 in reply to Susannagrout]

It's not fair, to give you something to give you you're life back, and then take it off you! Hope you manage to get it back and stay on it. Good luck x

[troy04]

Hi,

When you say, "I’m required to have another break in treatment" - did the doctor give any other hints rather than saying how you get on?

It appears to me that your doctor is experimenting. May be s/he thinks body will somehow auto adjust in the absence of Aimovig and continue to work. Surely doctors know that these antibodies (Aimovig) are created in the lab and body doesn't produce these in vast quantities required to mimic Aimovig's effect.

CGRP is very useful for all of us but in particular to those who are at high risk of having heart attack or stroke. Unless you are at risk of having heart attack or stroke, you should not be forced to stop this treatment just to see how you get on! Very strange decision 😕.

// troy

[Discodog]

Yes I had to sign an agreement before starting aimovig that says I will have a treatment break after a while. Aimovig was amazing for me at first but now the migraines are returning and my use of triptans is increasing again. Sounds like you’ve had a very successful time with the aimovig. Hope things are ok when you have a break.