“How did it every come to this?” I asked my MS Nurse as I prepared to inject myself for the first time with Copaxone. Not wanting to appear to show weakness, I pushed the button of my self injector for the first time and heard a bang as the device sunk the needle into my leg. My first thought was one of anti-climax as I was expecting to have felt the needle penetrate the skin, that I didn’t feel anything initially made me wonder if I had fired a blank… but then the squelch of the fluid made itself heard together with the visual red indicator on the autoinject device.
Copaxone is a daily injection therapy here is a picture below of the needle and my MacGyver style auto inject gadget.
The auto inject device houses the syringe so that all you do is pinch some fat, hold the device on the skin and push the button.
Every month I get a delivery of new injection syringes and medicine to see me through. As they need to be stored in a fridge, I invested in a dedicated mini fridge which can be found in my instagram stream for those curious. It is amusing in a way, that as a new patient you are given a free rucksack – of all the things! – and a user guide which has the happiest looking people on every other page as though being a copaxone user was a cool thing to belong to.
My first “proper” injection away from medical supervision was a different affair – without the pressure of a nurse watching, my true wimpiness to needles was allowed to present itself without anyone there to judge. It took me about 30 mins to pluck up the courage to “push the button”. Even psyching myself up with chemical brothers playing in the background. Now I am much better and can do everything in less than a minute. The injections themselves are completely painless, similar to a diabetic on insulin I would imagine. The worse thing is the immediate after effects. My MS Nurse warned me it would be like a bee sting, fortunately I have never been stung by a bee so don’t know what that feels like, however I imagine that this is an understatement and the reality is more akin to being stung by a swarm of hornets! The sting lasts for an hour or so but I am told the body will get used to it and the pain will subside. Personally for me there are days when I feel like a walking pin cushion with the injection stings of days prior still loitering.
There are plenty of disease modifying treatments available, even those that don’t require daily self harm rituals. The most important thing is to adopt one which feels right for you. After many late night reading sessions into each of the drugs, their “success” rates and side effects, for me Copaxone was the only option for me at this stage in my journey. I don’t like needles, but sometimes you need to face your fears to overcome them and after almost two months of daily injections, I think I am almost there – I am still not of the ability to inject without my trusty auto inject gadget :). Copaxone is the better tolerated of the drug therapies and so has the least side effects, some of the others alter the immune system in ways which for the minority have unintended consequences – this is a risk I am not prepared at this stage in my life to take.
For those interested in the science, Copaxone is a brand name for what is genetically called Glatiramer Acetate. It was discovered by Israeli scientists who were trying to create artificial substances to induce experimental autoimmune encephalomyelitis (EAE) in mice which is a similar to multiple sclerosis. The Glatiramer Acetate actually had the opposite effect and did not induce EAE but even reversed the effects of it in animals which had EAE. Glatiramer Acetate is a compound of amino acids which are similar to myelin and so the thought is that they act as a decoy in the body so the immune system attacks this instead of the hosts actual myelin therefore slowing down the progression of multiple sclerosis. It is by no means a cure but hopefully it will buy some more time for the scientists to understand MS better and invent something which is.
In and ideal world I would do battle with MS through the lifestyle changes which I have adopted and which are keeping me well. However, this is not an ideal world and I have this invisible disease and for myself, my family and my friends I made a promise to myself to do what ever it takes to stay healthy and if that means injecting myself daily then so be it.