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To think this is a big deal! First ever drug designed to prevent migraines approved in US

27 replies

riveted1 · 18/05/2018 22:17

FDA have approved the first ever drug designed to prevent migraine attacks. US patients can, in theory, be prescribed it from next week.

www.nytimes.com/2018/05/17/health/migraines-prevention-drug-aimovig.html

For some reason the only UK media to pick this up is the Daily Fail, so posting here for traffic.

OP posts:
LilQueenie · 18/05/2018 22:23

Is it the only thing? 2 years ago dd was having headaches and the doctor was going to prescribe tablets to prevent the headache from coming on.

catandtheteapot · 18/05/2018 22:25

My mother was being prescribed clonidine to prevent migraines 30 years ago.

riveted1 · 18/05/2018 22:34

Wow did either of you actually read the article?

All the current treatments used in migraine prophylaxis are "borrowed" from other conditions like high blood pressure, epilepsy, and psychosis. They weren't designed nor intended to treat migraine. This means the side effects are high and efficacy is low.

Triptans (acute treatments used to stop an attack) are great, but patients cannot take them more than 8 days a month. Not very useful if you're someone with chronic migraine (defined as more than 15 days of headache/migraine a month).

OP posts:
riveted1 · 18/05/2018 22:37

As I very carefully typed in title and post, this is the first drug designed to prevent migraines (not the first drug to be used to prevent migraines) :)

@catandtheteapot @LilQueenie

OP posts:
qu1rky · 18/05/2018 22:40

@riveted where do you get your information from that triptans cannot be taken more than 8 times a month?
My dd, 15, takes more than that and the doctor has never pulled us up on it.

I am off to read the article now.

LilQueenie · 18/05/2018 22:44

we still don't know all the side effects of this drug (one being constipation) and it doesn't claim to stop all migraines just reduce them.

riveted1 · 18/05/2018 22:47

@qu1rky Knowledge from the National Migraine Centre in London, confirmed by neurologist- generally recommended to not take triptans more than twice a week. Taking more than that cause rebound migraines and headaches which is a really frustrating situation to be in! Hope your daughters improve

www.nationalmigrainecentre.org.uk/migraine-and-headaches/migraine-and-headache-factsheets/medication-overuse-headche/

OP posts:
bostonkremekrazy · 18/05/2018 22:50

@qu1rky.
12 is the very max amount of triptan you should use in a month....the consultant or GP shouldnt be giving your dd more...it wont be helpful in the long run....it can trip you into more 'rebound' headache pattern

riveted1 · 18/05/2018 22:50

@LilQueenie at no point did I claim it cures migraine disorder, or that it has no side effects...

But if you did read the article, or any of the trial data, you would see the side effect profile seems to be (fingers crossed) quite favourable. Obviously longterm side effects are unknown, as with any new drug.

The fact remains it is the first treatment approved that was designed to prevent migraine.

OP posts:
qu1rky · 18/05/2018 22:54

Thanks for that link @riveted1, I shall mention it at her next drug review.
They tried her on daily topirimate because of the quantity of Tristan she was using, but the side effects were too much and she went back to sumatriptan.
She has had an ECG and propranalol is the next step, it works for me, just waiting to get her GCSE's out the way.
The injection sounds promising.

qu1rky · 18/05/2018 22:55

She averages 18 50mg a month.

riveted1 · 18/05/2018 22:59

@qu1rky ahh really sorry to hear that, topirimate is particularly bad for side effects sadly. I also get on well with propranolol, fingers crossed it works for her too!

If you are close-ish to London, the National Migraine Centre are excellent- they've really helped me and lots of family members get better control over the attacks :)

OP posts:
riveted1 · 18/05/2018 23:04

@qu1rky

At 18 days a month they are highly likely to be part of the problem and causing rebound migraines. I know (from bitter experience!) that it's so frustrating to have a medication that works but have to limit yourself to suffering through attacks without it so completely sympathise. Sigh.

The info I linked on medication overuse headache will explain it better than I can!

OP posts:
qu1rky · 18/05/2018 23:08

Unfortunately @riveted1 we are at the other end of the country.
Although not a specialist, I have been very pleased with the paedeatrician who we have been seeing. He hasn't given up on her yet!

Jux · 18/05/2018 23:15

I have been taking propranodol every day for years; it's supposed to stop migraines. On the whole it does quite well.

tangledyarn · 18/05/2018 23:18

It would be great to see this in the Uk. I'm still suffering chronic migraine despite preventatives snd botox. Really hoping for another option.

Faithfullittlelady72 · 18/05/2018 23:28

This would be amazing, I suffer constant migraine syndrome.. 200mg topiromate daily, 900mg aspirin daily and 4hrly prn, sumatriptan injections and botox 3 monthly!! I'm praying for a better solution

JJS888 · 19/05/2018 04:30

It's like the OP published a guide to murder puppies Grin FFS why are people so rude and supercilious. It's good news for some people. I get about 2 a year and that's bad enough

claraschu · 19/05/2018 04:53

Thanks for the information OP. It's great when something sounds like it might be actual progress!

As for why people are so gratuitously rude, I bet if this were approved by NICE and reported by the BBC, people would be thrilled. People hate the US on here, but (despite the damage done to research by the current evil administration) the US does far more medical research than any other country.

givemesteel · 19/05/2018 08:54

Yes OP, it is a big deal. I have chronic migraine so even something that halves the number I get would make a big difference to me.

Unfortunately I am breastfeeding at the moment and would like another baby so this drug is out for me for probably another 18 months but I hope by that time it might be available on the NHS.

qu1rky pp are right, that many triptans will be giving your DD rebound headaches, it's a horrible vicious cycle. Your paediatrician might be great but will not be a migraine specialist, recommend you make an appointment with a specialist, even if it means teavelling a long way. Obviously after her exams. Best of luck to her, she is coping with massive adversity with her health, no one realises how debilitating migraines are.

faithful gosh poor you. Didn't realise you could have sumiltriptan injections, how frequently do you have those? What's 4hrly prn?

riveted1 · 19/05/2018 11:52

@Faithfullittlelady72 Flowers sorry to hear you're having a bad time of it. I'm also on a ridiculous cocktail- topimorate and amitriptyline to prevent, rizatriptan, domperidone and naproxen to treat. Sadly I'm still getting around 18 migraine days a month so can't treat them all! How do you find topimorate? My neuro is keen for me to continue upping the dose but it is making me feel AWFUL- food tastes of nothing, brain fog, and pretty alarming weight loss. He did warn me it would make me a bit stupid, but I wasn't expecting to feel drunk on it Grin

@Jux that's great propranolol works for you- I had issues with not being able to exercise while taking it due to the heart rate side effects unfortunately!

It does make me a bit ragey when someone posts a strong statement about a subject they haven't bothered to research. Particularly @LilQueenie - if you had taken time to do a little reading you would see constipation, compared to the common side effects of the first-line current migraine treatments, is relatively minor.

OP posts:
riveted1 · 19/05/2018 11:57

@JJS888 had to check I hadn't had a brain malfunction and posted something truly offensive Grin Very happy (and would be useful) to hear some arguments against this class of anti-CGRP meds (cost, long term side effects, efficacy, effects in pregnancy), but pp seemed to just be aggressively anti it for no specific reason.

@claraschu Completely! NICE are currently reviewing the draft scope, some of the articles were predicting it will be approved in the UK as soon as 2-3 months. My neuro said it will be headline news here when that happens, just thought I'd share this early milestone :)

OP posts:
Semster · 19/05/2018 12:17

I'm excited about the drug and planning to talk to my GP about it fairly soon. I'd rather try something specifically for migraines rather than taking things like anti-depressants and anti-psychotics and BP meds that don't really work and have all sorts of side effects IME.

Hermanfromguesswho · 19/05/2018 12:22

Brilliant news. Mine are currently well controlled with propranolol. I get about 2 a month now (about 8-12 a month without it)

Lougle · 19/05/2018 12:38

@Qu1rky I'd really urge you to look into rebound headache/ medication overuse headache. It is a very difficult syndrome and it is frightening for patients to confront because when you're in the grip of debilitating migraines, the very last thing you want to hear is "Yeah, btw, that medicine you take for your dreadful migraines is actually causing your migraines, and the only way to stop it is to stop taking your medicine and ride out your migraines.... without medicine."

When I saw my neurologist I was at a stage of taking daily triptans as a preventative measure, as well as my Nortryptiline, 900mg aspirin and Coke, Topiramate, Botox, etc. It was working! I was only getting 7 migraines per month, and 10 other headache days, which in my book was better than the every other day migraines I was getting. I was horrified when the neurologist said that daily triptans were not ok, and that I had to get down to 8 per month. That was last year.

This month, I realised that my headaches were getting out of control, so I decided to go cold turkey on all pain meds for two weeks, and I've ridden out my migraines with ice packs, 4head, tights tied around my head, a lot of rolling around in bed, my Cefaly machine, etc. It has been grim, tbh. But it's been worth hitting the reset switch, to make sure that my migraines are truly migraines, and not medication overuse headaches.

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