My Experience with Ajovy

As someone who experiences Chronic Migraine/Status Migrainosus/MUMS; finding a treatment that reduces my symptoms and increases my everyday function. When the first CGRP injection Aimovig came onto the market this was a revolution, and there was mass excitement. Honestly it felt like a party was being thrown - my headache neurologist was hesitant to prescribe for me until we had some real world data, which seemed reasonable with my complexity.

Unfortunately the real world data showed that constipation was a side effect that was becoming prevalent - as someone with moderate delayed gastric emptying; it was decided with my gastric doctors that Aimovig was a no go. At the time this was devastating, I had been so excited to try this treatment with the talk around it. About 2 years later, we finally got Emgality and Ajovy in Australia - I had a decision to make, my Neuro was happy to prescribe either at this point as I had been in and out of hospital multiple times in the past 12 months with Ketamine and Lignocaine/Lidocaine infusions. I picked Ajovy; simply because the Patient Familiarisation Program (PFP) was free until Ajovy made it to PBS; Emgality on the other hand provided 2 injections for free, and then you had to pay for the injection (this has since changed, they now provide 1 injection for free). I was excited, and nervous. I had never had to inject myself before. Unlike Aimovig and Emaglity, Ajovy was an old fashioned syringe not a pen. I had experience with injections so that wasn’t a concern, it was just the physical act of injecting myself. How the system worked was that TEVA organised the dispensing and delivery of 3 syringes of Ajovy, and then you would receive a pack of your sharps bin, and instructions manual and such. The syringe needs to sit out for about 30 minutes and come to room temperature, it took me about another 20minutes to garner the courage of wiping the alcohol wipe on my skin, allowing it to dry (if you don’t it will sting!), pinch skin on my stomach and inject. I was lucky with my experience that I knew how to inject without bleeding or bruising (there are 4 quadrants around your belly button, you also should look to see any blood vessels around, this is what will cause your bleeding and generally bruising).

I was on Ajovy for 3 months; injecting on the 15th of each month. Carefully keeping a migraine diary as is required by the PFP. On the days that I injected - I felt the stinging and ache at the site of injection, which is to be expected. The most significant side effect I had was hair loss - which I was warned about! My neurologist made sure I was well aware of the risks. Unfortunately it is 7 months later, I am still suffering hair loss; and trying to recover from the thinning and loss - luckily I have a very understanding hairdresser who is amazing and is helping me through this, and is cutting my hair (before lockdown) in a way that helps hide the thinning.

Unfortunately for me Ajovy made no difference in my “migraine days”; the decision was made to discontinue treatment with Ajovy. I was devastated - I had been saying to friends and family, I’m not keeping my hopes up, just in case it didn’t work. When it didn’t work though - I felt defeated. I was made aware that each CGRP works differently and it’s not the end; however it does feel like it.

At the moment Emgality is going back to PBAC - trying to get onto the PBS, which would make it affordable for those with migraine. Unfortunately I don’t believe I am a candidate for trying this medication, but there are plenty of new medications on the horizon; but Australia is always the last to receive these new medications - I have been made aware that I am in mind for a medicine trial - but I may be too complex to be eligible.

Have you tried CGRP treatment/s? How did you react to them?