3 monthly Breaks on a CGRP
Why oh why in the United Kingdom do the majority of us have to take a break of up to 3 months after each year of a CGRP prescription? I keep being told it is in accordance to the rules and regulations of N.I.C.E.. but not for every locality. A Post Code Lottery comes to mind. Not Right.😡😡
- Whoa! What? This is news to me and I join you in asking why! Do you mean you have to stop taking a CGRP for three-months annually even if it is effective for you? Is the logic to evaluate the current efficacy of the drug in case the baseline has evolved over time? It seems a risk rocking the proverbial boat once an effective dose is established.
I have heard that the UK is more conservative with CGRPs in general in that it's likely a drug will be removed from a patient's treatment strategy if it is not significantly decreasing attack frequency. In other words, even if it is helping decrease the severity of attacks, CGRPs will be discontinued because severity is not as easy to quantify/measure as attack frequency.
How very frustrating, indeed! Have you discussed this with your doctor? Warmly - Holly (team member)Yes Holly and how STUPID! I am from the U.K and we have to meet a Very Strict Criteria. 15 plus migraines (minimum) per month to be accepted for a Trial Period of 3 months then we have a Review. If we have achieved a Third decrease in our migraines another 9 months prescription of the CGRP is authorised. A break is then compulsory for the majority of us patients in accordance of what Health Authority (Catchment) area we are - hence I refer to the Post Code Lottery Syndrome) There are ways of not serving the 3 months break if you are assertive enough after trying and saying “You simply can not manage”) - if you are lucky. I only had to serve 6 weeks. I think it is all down to “Funding” as I can’t see any other reason for taking “The Candy from the Baby”.. but it has Never been explained to us. My Specialist has been brutally honest and said it was N.I.C.E who are the Body in charge of All National Health Approval of Drugs. I have also heard the other alternative in that the Protein CGRP might have been restored in our bodies so we might not need the remedy at that time. Either way in my humble opinion it is “Cruel” to dictate to a patient who has a Chronic Condition like Migraine is, who has found relief only to face a term of abstinence to try and save the Service a few Pennies! I Very Much Hope You have found some relief Holly and My Advise? Don’t be a Wallflower, if you are unhappy stand your ground politely and “Shout”. My Very Best Wishes and Good Luck. xx That is great advice, indeed. We ultimately are our own best advocates but it is awful that we have to be while navigating such a draining and demanding complex neurological disease. And it sounds, in the UK particularly, that you are fighting an uphill battle with a system that is evaluating health against the primary measure of $ rather than compassion, understanding, and CARE. Truly unfortunate. We appreciate your helping us more fully understand what you're up against and the best way you've found to handle it. We are thinking of you and here to support you! Warmly - Holly (team member)
Thank You for your kind words and thoughts Holly. I think here in the U.K the problem is our Hospitals and Drugs are free at the point of use but that leaves only so much money in the pot left to spread and to pay for other medications. We have a new obesity injectable now which has been approved for general use - but that left a new Dementia drug approved but only on the “Private” and we all know Dementia type illnesses have become prominent as we are all living longer - that has left quite a debate here. About Migraine? We have Many and I mean Many in pain/unable to keep their jobs/live their daily lives as there is such a long waiting list to see a Neurologist/Headache Specialist. I was lucky. I started my migraine journey (after suffering since childhood but was told it was Sinus Disease) at the end of Lock Down, went Private at first with my Private Consultant who worked with my NHS GP (who at that time were only doing telephone consultations) this pushed me through the system quicker. 3 failed preventatives/2 rounds of Botox and a CGRP Ajove. Have now been approved for my 3rd year of Ajove. Is not a Cure, nothing is but I can now live a fuller life and make plans without fear of cancelling. And I have a “Confession Holly” - to make sure I keep being approved for further CGRP I “Lie” in accordance to my headache dairies I have to submit while on my yearly 3 month breaks.. I add a headache episode or 2 to make sure I cross the mathematical line of approval. I have sat opposite my Headache Specialist in the past with him doing the maths with a pen and paper in front of me!! It should Never Be but the sums have to add up here. I am now a Senior so I am a Wiley Old Fox with experience and maturity on my side.xxx I say bravo to you for successfully figuring out how to play the ridiculous game that has been placed in front of you to receive the care and medications that allow you to have a somewhat functional life! It sounds like you still are navigating plenty of discomfort due to migraine but the Ajovy allows you a semblance of normalcy and functionality, thank goodness. So, if you need to do what's necessary to have a quality of life- then, indeed, finding a way to access it IS your wisdom kicking in. It is VERY unfortunate that these games must be played and that the playing field is uneven and set up so that no one can win. It's madness. These randomly imposed breaks sound inhumane and arbitrary. I hope that "the system" gets righted soon. In the meantime, good for you for finding a way to make it work so you can get some relief. We are here for you- thinking of you - and sending love and compassion your way. Warmly - Holly (team member) 
my goodness, this is just beyond understanding to me. I just want to echo Holly, your need for cgrp medication is legitimate and without it you would really be struggling. I support you 100% for doing what you need to do to manage within a broken system. I appreciate it so much when our friends in the UK share with us what it's like to live with a chronic illness on the NHS. There are positives and negatives to every system, and we have much to learn from each other. I wish you continued success, keep doing the best you can! Hopefully someday all of this will be entirely unnecessary and we will all have access to the medication we need without so much hoop jumping. -Melissa, team member
Thank You for Your Kind Words Melissa, they mean So Much. Our America Cousins struggle with Health Insurance also with obtaining - as I read on Social Media so in a way we are all fighting the same fight with "Costs". There are so many heartbreaking stories that could be told. Migraine is such a complex disease with different symptoms as we are all individuals - does not necessarily mean having a headache. It could be silent with dizziness, vertigo, neck pain. One size does not fit all but this is not always recognised. Only today I answered someone from the U.K on FB who was struggling asking was his only option to buy a CGRP Privately. We have a marvellous Migraine Organisation that work as a charity offering reduced costs that helps greatly but that should not be the answer and not always obtainable for some people living out of London. This is not the site to get political but we know if pay cuts were made in certain areas there would be more money for the Health Pots. I respect how lucky I have been in obtaining a form of relief as I read that there are Many Many who are Struggling at this very moment. Bless them All and Bless You Melissa.xx I'm tagging one of our wonderful community members, here- who is also from the UK - as I'm assuming he can relate to you on these challenges, and he may have some insights or suggestions to share. I've been thinking of you and this conundrum you face in these last days since you shared what you're up against. We are here for you. Warmly - Holly (team member)
