NHS protocol that we take a break from CGRP

[Pippwin]

I am on CGRP injections prescribed by hospital clinic on the NHS, and they have transformed my life so that migraines are fewer and easier to treat. I have had migraine since age 10, I am now 68. They have been chronic since my 40s.

Now the clinic has to take me off the CGRP ( Nice guidance and Trust Protocol) to see how I respond. 2 months after my last injection I can send in diaries to justify going back on the injections, but by then I know from the research I will probably have had several awful migraines and many days unable to swallow my blood pressure meds, which puts me at risk of stroke. Also my husband has a heart condition so I need to be able to care for him intermittently as we wait for an op.

Despite telling them my story, the clinic say they have no choice.

There is already research done to support my fears that most people return to chronic migraine 1-3 months after coming off the cgrps.

I feel for everyone in this awful situation. I appreciate the cost of this treatment but we have had years of suffering and dread. A huge impact on family and career and mental health.

Does anyone have this cgrp med in the UK privately who can tell me if they too have to take a break from cgrp - or is it just nhs patients?

Would be grateful to hear from you.

❤️

[HGM30]

Hello. I totally sympathise with your situation as my presentation re history of migraine is very similar to yours (with the exception of the BP issue). My NHS neurologist insists that a three month break from Aimovig is mandatory. I was initially prescribed for three months, had to take a break to prove effectiveness and then was permitted another nine months. I am now on another enforced three months break. It feels very distressing to know that you will drop back into the chronic suffering yet again having found at least some relief after decades of chronic migraine. I did approach a private neurologist to look at paying for a temporary prescription. The cost would be huge for consultation and Aimovig but I figured if I could bridge the three month gap it might be worth it. He sympathetically explained that he would have to notify the GP and therefore this, in turn, could jeopardise my NHS treatment if I didn’t fulfil the three month break protocol. He saw no justification for it. It seems particularly cruel after having tried so many other ineffective treatments when at last there is some relief you are prohibited for a period of time just to get back on the merry-go-round of proving suffering again. What other chronic condition or treatment specifies this? If I find, or you find, any other solution it would be helpful to keep others informed on this thread, my thoughts and sympathies are with you and anybody else in the same situation. Good luck.

[Lovecake]

I’ve just be prescribed Ajovy injections. I pick the first one up today. Bit scared of starting as I have bad reactions to many meds/fillers. But I will have to be brave.

I found it odd in the consultation that the Dr said I would have to stop taking it after a year. Same as you I was thinking if it was working after having so many migraines then why stop it so soon? And your post is even more baffling with just 3 months of injections then a break.

They wouldn’t stop someone on diabetic meds every now and then, or heart meds etc. The only one that seems to get messed around is thyroid medication. I have an under active thyroid too. More often than not the nhs doctors leave thyroid patients woefully under medicated and so they continue to suffer but the doctors aren’t trained to understand it.

The Dr I saw did say that she can prescribe Ajovy wafers which can also be used as acute treatment. So I’m hoping that she will be kind and not make me go “cold turkey” with the injections (assuming they do suit me).

I hope you don’t relapse too badly in your enforced break. Please post how you get on. All this advice is invaluable. It helps us understand things and maybe we can try and get the powers that be to change their guidelines.