My CGRP journey
By: Dawn Rudman, who has chronic migraine
My migraine started infrequently at the age of 15. At 23 they became more frequent with 15 or more attacks each month and I was put under the care of a neurologist.
Between the ages of 30-40 my migraine became less frequent and I was discharged from my neurologist. Once I reached the age of 40 they came back with a vengeance hitting 20-25 migraine days a month. This tied in with changes to my monthly period and hitting peri-menopause.
My doctor referred me back to a neurologist in Berkshire. I had an MRI scan, tried more preventives and also had a nerve block injection. There were no improvements and the neurologist didn’t know how to help me any further, so I was transferred to a specialist headache centre within a hospital in Oxfordshire being told that I would have far more choice of treatments available to me being in their care.
In Autumn 2018 I had my first appointment. I tried another preventive but experienced awful side effects and I could not continue. Over the years I have been on numerous preventives, triptans, herbal medicines, vitamins, alternative treatments so the choices left were more limited.
Botox was discussed but there was an 18-month waiting list for this at the hospital and as I have a fear of needles, it was suggested that it may not be the best treatment for me.
CGRP antibody medication
I was advised that a new calcitonin gene-related peptide (CGRP) antibody medication called Aimovig (erenumab) was available, a once monthly injection to be administered at home that had received good feedback. I had read about this with excitement in online migraine groups and noticed that many hospitals had taken the supplier Novartis up on a free three-year trial for their patients as it was not yet available on the NHS. I discussed the trial option with my neurologist but he confirmed that my hospital had refused this from Novartis as they didn’t feel it was fair on the other CGRP antibody medication manufacturers for Novartis to have an unfair advantage over them so I was advised if I wanted to try this it would need to be as a private patient.
In January 2019 my migraine were affecting me chronically daily, so I asked my neurologist to start me on Aimovig. I had a private consultation with him for £320.00 and he then wrote me a prescription for Aimovig, which cost £386 per month.
Despite my fear of needles, my mother injected me each month and slowly my migraine started reducing. Within five months I was down to three attacks a month and I felt that I had my life back and was overjoyed. Aimovig was not without side effects which I noted to my neurologist but it was left to me to research and then report to my GP what my side effects were and to have counter medication to support the side effects.
In the Summer of 2020, another CGRP antibody medication, Ajovy (fremanezumab) from Teva, had been approved with the National Institute for Health and Care Excellence (NICE) and from discussion content on the same online migraine groups, the same group of hospitals who had the free trial of Aimovig were now prescribing Ajovy to their patients on the NHS for free. My neurologist said my hospital could not offer Ajovy on the NHS as the internal business development team had refused to pay for a pharmacist to write a business case to administer Ajovy so I continued on Aimovig.
Spending thousands of pounds on medication
Aimovig continued to work well but had drained my savings and I was also borrowing money from family to fund the drug as it was still not available on the NHS. To this date I have spent over £7,000 on Aimovig. In October 2020 I had to come to the very hard decision to stop the treatment as I simply could not afford it anymore.
I then went ‘cold-turkey’. I was advised by my neurologist to complain internally about the delay of Ajovy to the official complaints team within the hospital as it may speed up things if the patients were unhappy. That complaint was raised at the end of October 2020, with a 25-day period of investigation. To date (January 2021) they have not responded to me blaming Covid-19 for the delays. I have no idea when my complaint will be concluded. Ajovy is still not available at my hospital via the NHS.
In December 2020, in desperation as I am now back to having at least 20 migraine days a month I borrowed money for three more months of Aimovig treatment. I asked my neurologist to put me back on Aimovig and was told I would need to pay another consultation fee which my neurologist admitted he knew I could not afford that so I have had to stay off all CGRPs.
I am now in the process of moving to a new hospital and neurology team which is closer to home which is prescribing Ajovy and hopefully in the future I may have a better treatment plan and a more caring neurology team.
In short, getting CGRPS on the NHS when you are a chronic migraine sufferer is a postcode lottery, which is very unfair.
There are many migraine patients who are unable to function or able to work due to their debilitating migraine.
Sadly, there seems to be two types of hospitals/trusts within the NHS. Those who are forward thinking, where their patients rightly get the treatments which are in their best interests, and those hospitals/trusts who put administration and budgets in front of patient care. This needs to change.