For me the reality of this condition really hit when I was faced with making a decision about DMDs (Disease Modifying Drugs). Times have changed since I was diagnosed in 2010 and patients are now fast-tracked onto treatments to avoid further long-term damage. However, back in my day my MS had to be seen to get worse before I could be considered for the uber-expensive wonder drug, Tysabri. That’s right; my Neuro actually had to wait a year to tick a box to say that I had had at least 2 disabling relapses within the year following diagnosis before I was allowed to commence treatment. Needless to say my MS did get worse and in fact appeared to be progressing at such a pace that by the end of that year I was considered to have “rapidly progressing acute relapsing remitting MS (RRMS)”.
Should there ever be a good time to be diagnosed with RRMS, it is surely now. These days there are a number of treatments to choose from; a far cry from a mere decade ago. There was, however, only ever one drug option that my consultant would even consider putting me on: Natalizumab (more affectionately known as Tysabri). In his opinion no other drug even came close to the effectiveness of Tysabri and to try me with anything else would be “useless”. The decision had been made for me and on voicing my reluctance due to the possible side effects (PML – a brain disease that brings about a slow decline into a vegetative state and eventually death) I was immediately shut down with the statement that it was “Tysabri or a wheelchair within a year”. My fear of being dependant on a wheelchair obviously outweighed my fear of PML, so Tysabri it was. I should state here that although the risks are very real, the hospital and staff are incredibly good at monitoring patients – with more frequent MRI scans, blood tests and an on-going review of symptoms. So far the drug has worked wonders for me and I feel incredibly grateful to have been saved from the trauma of daily injections and flu-like symptoms associated with Interferons and other drugs.
Starting medication for MS is truly frightening, these are real hard-core drugs we’re talking about and I was terrified when the time came to have my first infusion. Tysabri is administered via a drip every 4 weeks at the hospital and having lived a very sheltered life up until this point my mind went into overdrive and I imagined this scary poisonous drug being super-fast pumped into my veins. I felt sick at the thought. But when it came to it, like most things, the thought was much worse than the reality. Rather than trying to recall what my feelings were, here is an extract from my MS diary from 2011, I’m sure many of you can relate to this:
“I’ve been clinging onto the hope that I can postpone treatment at least another year, while all the time knowing this is unlikely and probably not wise. I’ve been wanting it and dreading it. I feel so torn and so confused… part of me feels excited that medication may improve my life and give me much needed energy to do more. It could mean that I am no longer as limited or frightened to do anything. I feel relieved that the decision has been made for me, in a way, and that I’ve finally received acknowledgement of how bad I am getting. I’m no longer being left or expected to just get on with it.
But always there is the fear of the unknown. The fear of what might happen if things go wrong. Am I taking too much of a gamble with my own life?
The whole procedure and commitment involved in the infusions scares me. It really brings home the reality of my disease… I can no longer blank out what is happening to me… However, I can’t let my fears and insecurities get the better of me. I must stay strong, the same way I have through the last several months. No-one can go through this for me, no-one can take it away. This is mine to deal with and I will overcome it. I will stay strong and I won’t let anyone see how scared I am. I can do this”.
I’d like to add here that 6 years on, taking Tysabri was the best decision I could have made. It has quite literally given me my life back. Yes, I still struggle and MS is always there – but there is definitely some kind of magic in that juice!
Any thoughts on your own treatment stories or the decisions you had to make to start something?
NOTE: I am not an expert in all of the different MS drugs on the market, and I wouldn’t want to offend anyone by getting anything wrong – so this is simply my story, my experience and my take on things… Anything in quotation marks come directly from notes made at the time of appointments, from letters received from my Neuro or my own diary.
First published 27 September 2017