CGRP on the NHS

For those in the uk, if you have been prescribed any of the cgrp drugs (Ajovy,Aimovig,Emgality) were you required to do regular blood tests and or blood pressure checks while using the medication? The nhs website says this will be done if you’re prescribed the drug but i want to know if it’s actually being done or not. I’m considering Ajovy and want to know what to expect. I realise there might not be many active members here who have been on a cgrp.

Hey

Currently trying to get funding for AJovy alongside my Amitriptyline. I’m afraid I can’t answer your question but echo you… interested to know :relieved:

Sorry you are struggling with funding. It shouldn’t be a postcode lottery, i think i am eligible as i meet the criteria to acess Ajovy and my neuro mentioned Ajovy at my last appointment and showed me how to use the injector pen so i could consider it.

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Hey

So because I have my treatment in Oxford I am out of the catchment area for NHS treatment so I have to apply for CHC funding? Anyway I’ll probably go private for the first trial to see if it works first. :crossed_fingers:t3::woozy_face:

Good luck. It’s super expensive.

Hi, I might not be of any help as I’m not in UK…but I’m on Ajovy. We don’t have any of the restrictions really like the uk. I have never had any blood tests or blood pressure tests whilst using this. However after reading up on cgrp’s, I can understand why you would. It inhibits CGRP being released which is great for migraines, but helps with preventing heart attack and stroke. The long term side effects are not known yet… would be interested to see them. I’ve been on since Jan and find it very helpful for headaches.

Are you not sold in regular testing?

@MissMigraine I didn’t know Ajovy had injector pen. I thought the others did?

Thanks for the reply. It’s the possible long term side effects and the unknown factor that concerns me about Ajovy. I was successfully on Flunarizine for 2 years but had to stop due to side effects. As soon as i came off the drug VM returned. So i’m going to need a treatment long term, if not indefinitely, since 2 years of Flunarizine didn’t stop the migraine from returning. There are, however, fewer side effects with Ajovy than the other anti cgrp drugs. No constipation or joint pain, for example.

Ajovy is delivered in a pen very much like an epi-pen for allergies. You just hold it against your skin and press down. You don’t change needles or syringes or phials like you do with insulin.

Oh that must be new. I have the needle type. I would rather the needle I think. It’s been good so far. No side effects at all.

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Belinda how are you doing?

Are you finding Ajovy to be helping you at all? I was going to go private for the first one as it’s going to be ages until I can get it on the NHS. Amitriptyline is struggling to help me cope lately with migraine so might have to rethink shortly. X

I’m going well. Still notice slight dizziness most days but completely manageable. My most worrying symptom is this stop start vision watching tv still. Need a proper discussion with neurologist about this. Ajovy is keeping migraine at bay. Will be interesting to see how it performs if I’m bad. It’s good maintenance but is it good at getting you better? If that makes sense.
I get it for $42 a month. Good luck with it. It’s been totally fine. But do think about the heart and stroke thing a bit.

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Hey

Yeah I know what you mean. It’s hard to say what works and what doesn’t sometimes, I think Amitriptyline does help me but if I go through any amount of stress or a cold or something everything flares up, the head movement, motion sickness, all of it comes back. I don’t think Amitriptyline alone is enough. Ajovy has seen you through since January though so that’s definitely a positive thing. Keep us posted. X

I have been reading patient experiences with ajovy on migraine.com and have now scared myself. Reports of severe constipation or gastro problems, hair loss, dizziness/faintness, even vision problems. When i first heard about ajovy i was keen on it because of lack of side effects ,now i’m not so sure. Of course ,all meds have side effects but i have some degree of medical anxiety and i hate the whole experience of trialing meds, yet i know i need to do it. I don’t know whether to just suck it up and try ajovy or consider something else. I’ll have to discuss it with my neuro.

I read all of this too. You might find some of my stressing on here just before I took the leap. Seriously though, I’ve had zero side effects. Not even pain at injection site. Absolutely nothing. It doesn’t even hurt. Which is why I choose needle, as you can inject nice and slow.

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That’s good to know :slight_smile: