When I was an exchange student living in the International House at UC Berkeley, in the dining room we played the hand game rock, scissors, paper to decide who would take on the ‘chore’ of returning dining trays. If you lost the game you took your tray and the victors’ to the return hatch.
After months of deliberating over whether to embark on the new drug regime of Tysabri in 2012 a bright young friend suggested that a simple game of rock, scissors, paper, largely a game of chance, might be the way to absolve myself from such onerous decision making.
And onerous it had become. I remember reading about Tysabri when first diagnosed and the rush of excitement on hearing of its efficacy. It’s thought to be roughly two thirds effective in reducing the number of relapses per year compared to those on no treatment and 64% effective at slowing disability progression. But I also remember the adjacent relief that I yet wasn’t eligible for a drug that had a small risk of inducing PML the incurable, fatal or severely disabling brain infection that is its major side effect.
I didn’t get to postpone the decision for long. One year after diagnosis a move to Tysabri was mooted. It provoked an angst ridden response, unnecessary as an MRI then revealed no significant changes to warrant a change in drug regime. Yet by early 2012, Tysabri was on the cards again and so was the JC Virus stratification test, meaning a more nuanced quantification of the risk of PML when receiving Tysabri infusions.
The JC Virus is something that 55% of us have naturally present within us, usually with no consequence, but it does dispose you to a slightly greater risk of developing PML on Tysabri (1 in 1000 in the first two years, 4 in 1000 following, higher if immunosuppressants have been used previously). I tested positive for the JC Virus. Given I was feeling quite well at the time, I decided not to move forwards with Tysabri.
However when you’re feeling well, decisions about treatments for MS are easier to settle. Imbued with optimism it’s easy to push aside difficult decisions, like dirty plates after a full and enjoyable meal with friends whilst there is still wine in your glass. But over the summer as my MS kicked back in, the decision, seemed unavoidable. Was a 1 in 1000 risk of PML really so bad? As my slow decline continued other friends on Tysabri seemed buoyant with their MS halted. I, along with the wise consul of my boyfriend and sister, faced the dilemma again.
It is these challenging decisions with MS or other diseases that throw you headfirst into the ‘undiscovered countries’ that Virginia Woolf wrote about in her essay On Being Ill. The decisions you face are alien to presumptions which you held prior diagnosis and often shock friends who you confide in. It seems unusual that ‘today’s’ medicine should be accompanied by such a risk. The feeling haunts me with MS, and undoubtedly it’s the same in many other conditions, that despite having new exciting treatments in sight, we live in a landscape that’s tomorrow’s yesterday, a place dominated by the absence of advances lying in the future. We live with the risks and the difficult decisions that will hopefully be negated in years to come.
Of course there are two sides to this story and we are also living in yesterday’s tomorrow and are fortunate to have treatment decisions to make, when just over ten years ago no interventions were possible at all with MS.
When I’m caught in these throes of decision making, there is no middle ground, everything is black and white; two choices. But in September 2012 I had my consultation in which I was anticipating to get the go-ahead for Tysabri, after finally making my mind up. An unanticipated third outcome swept in and took the decision right out of my hands.
Despite worsening mobility, my recent MRI showed I was not eligible for Tysabri after all.
Copyright © Cathy John 2013. All rights reserved.