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New Migraine drug - Erenumab

Posted , 8 users are following.

edp33
edp33

Hi,

I suffer from chronic migraines and it was great to see in the news about this treatment coming to the UK private sector in next couple of months, unfortunately the NHS rollout isn't until next year.

My private healthcare expired when I changed jobs last year, and they have stated that a new policy would not cover existing conditions.

Can anyone recommend a medical insurer that would do this?  Or can I pay for treatment directly, think it is £450 a month for an injection,  I assume it would have to go through insurance, I cant just turn up at a clinic...

Thanks

1 like, 8 replies

8 Replies

  • lauren08623
    lauren08623 edp33

    Posted

    Hi,

    I’m interested in this also and was doing some research on it. I think it’s available direct from Amgen... I’m pretty sure there was another site selling it too but it’s very expensive. 

    I desperately need a good preventative too after this 16 day migraine! 

    If you find out any more info on it I’d be grateful to hear it.

    Lauren

  • jenny59618
    jenny59618 edp33

    Posted

    Hi I am interested too as had migraines for 10 years now and no medication has worked 😢 can I ask what you have tried please xx

    • lauren08623
      lauren08623 jenny59618

      Posted

      Hi Jenny,

      I presume your message was to the injection but just thought I’d offer some help on what I’ve tried so far...

      The new medication I’m currently taking is lamotragine (an epileptic medication) and also gabapentin, along with supplements- magnesium and riboflavin (which are high doses) These combined so far seem to help.

      I was initially diagnosed with hemiplegic migraine but now have basillar migraine/ brain stem aura tied in which have some scary symptoms!

      I’m not sure it’s allowed on here but I have met a brilliant neurologist who’s treating me in London, if you need advice on doctors...

      I would also recommend Thai massage, even if if it’s for therapeutic effects. If you can find someone good it’s definitely worth it. I’m not sure what symptoms you’re suffering with but I always get a stiff neck and soreness in the top of my back so having this helps relieve some tension! 

      Hope you start having some relief soon, I know how debilitating they can be 😑 

      X

    • Sandra1234
      Sandra1234 lauren08623

      Posted

      Hi Lauren

      Your email was helpful

      I have vestibular migraine. Is there a way you could pass on info about your helpful neurologist??

      Many thanks.

      Sandra.

    • lauren08623
      lauren08623 Sandra1234

      Posted

      Hi Sandra,

      I messaged you privately as I’m not sure I’m allowed to mention names etc on here. Hope it helps x

  • Sgt.lindalee
    Sgt.lindalee edp33

    Posted

    I just wanted to add that drugs with the ending "mab" are man made medications that were originally designed for auto-immune disorders, it doesn't mean they won't work for other conditions, it just means they have not been around too long & while they may have test/trial results for the MAIN purpose they were created, there may not be trials for OTHER uses, also they can come with a lot of side effects(this is an injection so it stays in your system an extended period or has lasting effects) just be aware of NEW meds & their side effects, be sure to ask Dr. HOW it will help, what to expect, report side effects & don't be afraid to ask questions...Best Wishes to all seeking a solution to Migraines(so many types & symptoms) it is life changing & not in the GOOD way....💟Praying for you all to get relief soon, (I secretly wish my head was detachable for a while)😳?

  • gaye39866
    gaye39866 edp33

    Posted

    I’m currently on erenumab in the US. I’ve been on it for 6 weeks. Amgen in the US is giving it free for 2 months and then working with insurers after that. I have private insurance. We do not, as I’m sure you know,  have universal healthcare.  I understand they are still going to work with those without drug coverage to get the drug to you. It may have helped some. I started on a high dose of magnesium about 10 days before I started on erenumab. It was already helping. In studies it reduced migraines about 10% on the average I believe. I was having 5 a week. With the magnesium and erenumab I’m down to 2 or 3 a week. There are more like it coming out. I’m still hoping for something that will prevent almost all of them. Good luck!! 
  • Joyous18
    Joyous18 edp33

    Posted

    I too would be interested in an injection for migraines but would be very aware of the side effects too as people say it’s an INjection  and can’t be rectified so untill it has proven tests in the U.K. I would be very apprehensive in getting the jab everyone is different and so could react differently and I am very cautious with medication I’m always reading the leaflets that come with them to see what side effects to expect . I am on nortriptyline 30 mg a day for prevention of migraines which doesn’t stop the amount of them I get but are less severe but they do make me put on weight so I want to reduce the tablets and come off and see how I get on .
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