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.

❤️