I’m something of a Tysabri veteran, having received monthly infusions for the past 12 years. For 75 per cent of my time post-diagnosis, this drug has been doing its thing – keeping my CNS and immune system at arm’s length from each other. When the MS nurse called a couple of weeks ago to inform me that my April infusion was cancelled due to the ongoing COVID-19 pandemic, I didn’t panic right away. There was a part of me that was relieved. After all, if I do need to venture outside and break self-isolation, a swamped London hospital would hardly be my first-choice destination.
was the fact that the MS nurse couldn’t be certain whether Tysabri infusions would resume in May. The anxiety arising from the idea that circumstances beyond my control could result in a complete cessation of therapy began to weigh heavily on me. I reflected on how much easier life would be if I was on tablets or injectables and could just self-medicate at home. As it happens, everything was flipped around following a second call from the MS nursing team on Friday evening. Infusion slots for April were now being reinstated, partly in response to the disquiet being expressed by many of my fellow patients.
Now there was a tough call to be made. I was told that many MS patients still wanted to attend the treatment unit but some were opting to stay at home, given all the government advice around social distancing during these dark dystopian days.
I’m usually pretty proficient at postponing difficult decisions but didn’t have that luxury this time around. My ultimate, albeit doubt-filled decision to attend the infusion, boils down to two factors.
Firstly, the MS nurse still could not state with any confidence whether infusions would be offered in May. This means if I miss April, I would be looking at at least 8 weeks, but possibly longer, without any type of MS treatment. With the way things are going in the UK right now, can I really bank on there being a more favourable NHS outpatient environment in May and June? I’ve already psychologically accepted the idea of skipping one month’s infusion anyway. If I can squeeze April’s infusion in, I should be able to hold out right through to the summer, whether this is forced upon me or not.
She got it on eBay a few weeks ago, including masks, gloves and gowns. I feel like quite the idiot for telling her that she was being overly cautious. I will avail myself of the kit during my visit and socially distance as much as is practically possible.
The stress around discontinuing infusions very much reminds me of the incredibly difficult decisions that we are often confronted with as people living with MS. Right from the get-go, we can be transported from a life of blissful, often youthful, ignorance and asked to make a long-term treatment decision on an array of drugs we have little understanding of. If our MS appears to be more aggressive, we can consider more powerful medications but which sometimes involve riskier side-effects.
Then there are all the challenging lifestyle and social choices that have to be made. Those with invisible disease are constantly having to think about disclosure and those further down the road try and balance seeking appropriate support with not letting MS intrude into every aspect of life. For us infusion veterans, who’ve had MS for many years and have accumulated some disability, it’s even tough to measure how well a treatment is working over the long haul. After all, there is no placebo-treated version of ourselves to compare with. Yes, we consult with our neurologists but many of us also have to rely on gut instinct and look through the very personal prism of how we frame our own MS.
The human race is living through unprecedented times. We are all under assault from an invisible enemy we could never have anticipated. Though we are rapidly gaining knowledge, there is still so much yet to be fully understood. The world seems upside down. Difficult, narrow choices will be made by us, and for us. I wonder if anyone else out there with MS is getting a sense of déjà vu.
I was diagnosed with RRMS way back in 2004 at the age of 26. The diagnosis was devastating. I’d never previously experienced any ill-health and was living in London at the time enjoying a very active work and social life.
After my diagnosis, I was struck with how the lives of so many of my peers were just chugging along as normal and yet mine had changed forever. I felt completely dislocated from reality and longed for contact with other young people who knew what I was experiencing.
I began writing about being young and living with MS and this, not only helped me launch a career in health journalism but enabled me to meet George Pepper, the founder of Shift.ms in 2008.
I became a trustee and director of Shift.ms in the months prior to launch and sat on the board for four years.