A disclaimer – I realise that this series of posts on medication are quite negative. In no way, shape or form am I advocating to pursue life post-diagnosis without treatment unless that is advised by a neurologist. How anyone decides to live with MS is their own extremely personal choice, however I will always take the advice of my medical team and will never consider not being medicated unless that is ultimately their recommendation.
My last MRI in June 2016 showed new lesions on my brain. I was on Copaxone at the time, and clearly it wasn’t working. I couldn’t say I was surprised, I knew Copaxone was a weak drug and had gone on it specifically for that reason; my body needed a break after a year of life-threatening side effects from other disease modifying drugs. But just like my annoying younger brother (sorrynotsorry Tristan), my brain had thrown a tantrum and was demanding more attention.
There was just one small problem – having a seriously rude immune system that refused to respond normally to treatment meant I was running out of options. I had already tried Tecfidera, Gilenya and Tysabri, and Aubagio was not an option since I am a female of child-bearing age. I suggested Lemtrada, but my neuro was concerned that such a strong treatment could exacerbate my pre-cancerous conditions (despite Lemtrada ironically being a type of chemotherapy).
The solution was that I would stay on Copaxone until a new drug called Zinbryta (daclizumab) was approved for the Australian market. Zinbryta sounded peachy – clinical trials showed it to decrease lesions by 70% and relapses by 54%. And hey, I was pretty damn pleased with any change in medication that meant I could drop from stabbing myself 156 times a year to just 12. Zinbryta is a sub-cut injection once a month. So I said take all my money and sign me up, except no-one actually took any of my money because the pesky drug wasn’t in the country yet.
Fast forward 8 months and I was invited to take part in a Patient Familiarisation Program (PFP), as the drug has TGA approval but the PBS approval has been delayed. This means that the pharmaceutical company, Biogen, will give me the drug for free until it is on the PBS (may the drug never be approved so I never have to pay for it).
If anyone reading this is about to start Zinbryta, I would recommend NOT reading the drug’s US website unless you enjoy feeling like you are about to die, which is what I convinced myself would happen at 10pm one Sunday evening.
My MS nurse, Michelle, alleviated my concerns pretty quickly though after showing me data from the trials. Phew – another near-death experience avoided 😅 There is however a significant risk of liver problems, so I had to have an initial blood test to assess my baseline liver function, and will have monthly blood tests from here on in to make sure nothing untoward is happening to my little alcohol-cleansing friend.
Before I knew it, a nurse called Jenni from Biogen (who turned out to be the same sweet nurse who managed me when I was on Tecfidera) was at my house for my first dose. I was absolutely fine with self-injecting Copaxone however my first couple of injections were terrifying because I didn’t know/couldn’t remember what to expect. So I was a bit of a chicken for my first injection of Zinbryta as well!
Here’s what I learnt:
- Zinbryta was EASIER to inject than Copaxone as you don’t need to load the autoject, but it is SCARIER! I used to describe injecting Copaxone as putting an unclicked pen to your skin, and clicking the button would make the nib come out and pierce your skin. With Zinbryta, although you can’t see it because it is hidden by safety casing, you have to manually push the needle into your skin 😱 The autoject detects once the needle is in and automatically dispenses the medication. Apparently this is the same for all Biogen injectables (ie. Plegridy).
- There was a sharp almost burning sensation as the medication went in and was tender for a few minutes afterwards. I’m 99% sure it was from the medication and not the needle. Jenni suggested it might have hurt because Zinbryta is a viscous solution.
- I injected into my thigh – the area was red for a few hours afterwards but that was all. Can we just have a second to talk about how bloody good it is to inject and NOT have a welt afterwards?! #byecopaxone
Given the whole manually-sticking-the-needle-into-my-skin thing, I’m not particularly looking forward to my second dose. You better appreciate this, brain.
Anyway, from here it’s a matter of being monitored to make sure I don’t develop any hectic side effects, and then assessing the drug’s impact at my next set of MRIs.
Wish me luck!