But why would someone have needle anxiety when what you’re about to self-inject every day, in fact slows down the progression of your chronic illness?
Although my emotions regarding needles does not amount to belonephobia, I have gone through moments where I simply could not press a needle in my skin. Using an Autoinject only made it worse. Pain doesn’t scare me (anymore). In fact, I’m going through a pretty rough time right now because of trigeminal pain. Knowing however, what the prerequisite was for having to inject myself on a daily basis, has, on occasion kept me from self-medicating.
COPAXONE® (glatiramer acetate injection) has been my daily DMT (disease modifying therapies) for 8 years now. My MS has relapsed several times, but when I look back with a realistic view, I finally agree that Copaxone is doing its job, albeit not 100% all the time.
I have learned to live with that reality.
I had to learn to live with it.
MS is an illness that comes in four different types, has 50+ associated symptoms and has very unpredictable patterns of behaving. Finding pharmaceutical treatment in one form, i.e. oral, subcutaneous or intravenous, that completely fits the patient is almost impossible. Yet, as time moves forward, we are steadily seeing new medication appear on the market.
At the time of my diagnosis, there were only four injectables available for relapsing/remitting MS: Avonex, Copaxone, Betaseron and Rebif, all with varying degrees of success. Today, MS treatment follows a multidisciplinary approach, supplemented with one of the 12 first or second-line DMTs available in Ireland in the form of tablets, IV administration and self-injectables.
With the arrival of oral and intravenous treatment, it would be easy so to think, “OK, this new medication sounds perfect for me – no more needles – so I will ask my neurologist to prescribe this to me.”
Sadly, this is not how it works.
Each medicine has a certain MS-profile attached to it. Because of the nature of the illness, sometimes second-line treatment can be given first-line for patients with highly active MS. Sadly, high-tech medication also comes with a hefty price tag, which means that trying to bring it to people with MS becomes a political game. Postcode lottery prescription is a fact, as is hospitals and/or neurologists doing their own thing.
In my case, Copaxone, although reimbursed, costs the government €916.33 per month, with an annual price tag of about €10000. This is without the cost of medication for neuropathic and trigeminal pain, vertigo and narcolepsy relief, eye medication and beta blockers.
Need I go on?
I can, but it’s not my intention to drive you senseless.
Sadly, Ireland and its inhabitants are still living in an era filled with post-recession leftovers, which means that financial ‘cost-effectiveness’ of people with MS and lack of access to medication is still a big issue. Advocacy for and with the Irish MS Society and for people with MS has been filled with cerebral activities trying to tackle all this, which resulted in a meeting with the Irish minister of Health. I’m about to don my horse and yours truly in advocacy attire once again as ill people should not be at the receiving end of seven years of recession.
But… it’s also good to note that there is at least one bright light shining on those who have to inject themselves on a daily basis.
In my case, after about 2900 injections over an 8 year period, I started the 3-injections-a-week schedule instead of daily injections, as Copaxone is now available in 40mg/ml syringes instead of the 20mg/ml ones. While I know that Copaxone will not cure my illness, it can make relapses occur less often. Knowing that there won’t be a daily needle waiting for me at 8pm from now on, makes all the difference as I don’t want to be confronted with myself and with an incurable neurodegenerative illness every single day.
So, with all the drama of non-dispensing of necessary medication to people with MS in Ireland, those who have been injecting Copaxone on a daily basis can now say, “No injection today!” It’s even better when you also receive a text message each time you have to inject, to make sure you don’t skip a day.
It’s a tiny light to guide you along, but it’s an important one nonetheless.
And relatively speaking? Eight years of 156 injections a year? That is approximately 1200 needles instead of 2900.
That, I can live with.
Further reading: https://irelandms.com/2014/02/24/injecting-object/
Neurologically challenged by MS and personally by her will to succeed, Willeke is a disability awareness advocate seeking to improve neurological services in Ireland. By highlighting difficult issues that come with a MS diagnosis, she hopes her words and tenacity can bring justice to people most in need of a modern, inclusive healthcare system that looks after every aspect of life.
©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2015. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.