CGRP drug availability in the UK. - National Migraine...

National Migraine Centre

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CGRP drug availability in the UK.

designer111 profile image
28 Replies

The Migraine Trust International Symposium held last Sunday had Dr Peter Goadsby speak about Aimovig. He said the drug arrived in the UK last Thursday and 'could' be available on prescription before Christmas.

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designer111 profile image
designer111
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28 Replies
scottlondon profile image
scottlondon

Does that mean the nhs will be prescribing it ?

designer111 profile image
designer111 in reply toscottlondon

Yes I assume this is what he is referring too. Don't know anymore than that though sorry.

Camp-girl profile image
Camp-girl in reply todesigner111

I would love to use it here in the US, but I can't afford $6,000 😢

mychronicdaze profile image
mychronicdaze in reply toCamp-girl

Use Teva's Manufacturers Coupon. It shouldn't cost you anything. It's good for all of 2019. You can find it just by searching online for the coupon.

Frodo profile image
Frodo

Let's hope it is and that it works, without too many side effects.

scottlondon profile image
scottlondon in reply toFrodo

There are some Facebook groups full of people taking it already from the us.

For some people it’s is working and for some others not, same with side effects some are having them and some aren’t.

Also there are people that are having results with ndph and chronic refractory migraine.

So personally I can’t wait to try it 🙏🙏

designer111 profile image
designer111 in reply toscottlondon

The doctor did make the point that UK peole were fortunate to see others from around the world to be the ginuea pigs. He did also say that it works almost instantly as in 24 hours

scottlondon profile image
scottlondon in reply todesigner111

It doesn’t work that quick, Join one of the groups I’m in.

m.facebook.com/groups/13341...

monster05 profile image
monster05 in reply toscottlondon

It works within 24 hours.

scottlondon profile image
scottlondon in reply tomonster05

What dose did you take 70 or 140 ?

monster05 profile image
monster05 in reply toscottlondon

675mg to begin with followed by 225 mg.

scottlondon profile image
scottlondon in reply tomonster05

Aimovig ? The drug that comes in 70 mg self inject pens, either take one or two pens.

How have you injected 675 then 225. I’m guessing you have made a mistake.

monster05 profile image
monster05 in reply toscottlondon

I haven't made a mistake. I haven't been given Aimovig. I have been given a different CRGP inhibitor.

scottlondon profile image
scottlondon in reply tomonster05

The discussion was on aimovig

monster05 profile image
monster05 in reply toscottlondon

No. The discussion thread is entitled 'CRGP availability in the UK'. I am taking a CRGP drug. There is no need to be so rude.

scottlondon profile image
scottlondon in reply tomonster05

The migraine trust international symposium held last Sunday had dr Peter goadsby speak about aimovig. He said the drug arrived in the uk last Thursday and could be available on prescription before Christmas.

monster05 profile image
monster05 in reply toscottlondon

There are three other drug companies developing CGRPs so, although it's the first in the drug company race, Aimovig won't be only one on the market.

monster05 profile image
monster05 in reply tomonster05

The CGRP drug that I have taken has been approved today. Its trade name is Ajovy and it is manufactured by Teva. I've had absolutely excellent results with it and I suffered with resistant chronic migraine for many years.

monster05 profile image
monster05 in reply todesigner111

That is correct - it works within 24 hours.

Quito profile image
Quito

Prof Goadsby also said on Sunday that Aimovig is now available on private prescription in the UK - though no-one knows the price!

For the NHS/NICE approval - as designer111 said - it should be available around Christmas/early 2019. Prof Goadsby assumes it will be available to people under the same conditions as Botox (3 failed prophylaxes and no medication-overuse-headache). But he also said he didn't know. He thinks the NHS will make it available as the benefits outweigh the costs.

Cat00 profile image
Cat00

My neurologists said she wouldn't be giving it to me as I respond to Botox and that the CGRP injections haven't been shown to work for chronic migraines. She said that doesn't mean it won't work on chronic migraines just that in order to get it through trials quicker they didn't test it on the most difficult/resistant migraines. Therefore she would only consider it if I stopped responding to Botox in the future.

monster05 profile image
monster05 in reply toCat00

I have taken it for long-term resistant chronic migraine and it works. I have not had a migraine since I started taking it.

MigraineMummy profile image
MigraineMummy in reply toCat00

Actually, there have been trials of Aimovig for chronic migraine too, and it has been shown to be effective as well.

Cat00 profile image
Cat00 in reply toMigraineMummy

I wonder if the NHS will ever give it to me instead of Botox, I'm having to give up breastfeeding in just under 3 weeks because I'm having migraines 70% of the time and they wont to give me Botox. I was hoping to do it longer than 6 months because I had to give up at 6 months with my daughter also but my migraines are unmanageable now. Mind you they are bound to say you can't breastfeed with Aimovig too.......

MigraineMummy profile image
MigraineMummy in reply toCat00

I can imagine that is very difficult for you. I had no idea that Botox was contraindicated when breastfeeding. Well, they never test any drugs on breastfeeding mothers, so of course all they an say is that it hasn't been proven safe. I'm sorry you have to stop breastfeeding but I do hope you can then take some medications which will help control the migraines more.

monster05 profile image
monster05 in reply toMigraineMummy

I have been taking a CGRP drug now for the last three months and haven't had a single migraine. My boxes of sumatriptan are full and untouched! I had suffered from 18-22 days of severe migraine a month so this is pretty much a different world.

Leylabell53 profile image
Leylabell53 in reply tomonster05

Where are you getting your CGRP from? The only one I have heard about is Aimovig. How much are you having to pay for it? Would be interesting to know more thanks

monster05 profile image
monster05 in reply toLeylabell53

I have been on a clinical trial for a CGRP drug manufactured by Teva. Trade name will be Ajovi. Obviously, I didn’t have to pay for it. I have been told that it is likely to be passed for use in the U.K. in May/June this year but that is likely to be private prescription in the first instance. I have nothing but good things to say about this drug. My migraines were long-term chronic and resistant to other treatments. I have not tried Aimovig but there is unlikely to be any difference in efficacy as both drugs work in the same way. I hope that this helps you.

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