Jonelle Roback, 55, a retired tax accountant, is one of scores of people with multiple sclerosis (MS) who have suffered debilitating side-effects after being put on to a cheaper new drug while in NHS care.
Here, she tells of her experience after being switched from the drug Tysabri on to its “biosimilar” Tyruko in May last year.
“I’d been on Tysabri since 2009 and had never had any problems with it. It’s a wonder drug for me and for a lot of other people. I was 100% stable on it and you’d never have known that I was ill. But when I went to Charing Cross hospital for my infusion last May I was told that they were changing the drug I got to Tyruko. There was no explanation.
“I immediately felt side-effects. I felt really tired – exceptionally fatigued – nauseous, had a headache and put on a lot of weight, nearly 10 kilos. That had never happened with Tysabri. On holiday last summer I looked bloated after putting on that weight.
“When I went for my infusion last July I told the nurse I wasn’t very happy about how I was going on Tyruko. She said: ‘everybody’s saying the same about the new drug’. The staff at Charing Cross were keeping a list of everybody’s side-effects. She told me to write in and describe how I was feeling, so I did that.
“I wrote to NHS England and told them about my experience. And I discovered through social media that other people had also suffered side-effects after being moved on to Tyruko. Imperial NHS trust, which runs Charing Cross, have been amazing with me and all the other patients affected. They’ve listened to our concerns and switched many of us back on to Tysabri.
“NHS England say that this problem has only occurred at Charing Cross. But when I sent a questionnaire to MS patients about their experience of Tyruko, the 52 replies came from people at 15 different hospitals in England who’ve had similar side-effects.
“NHS England are saying that Tyruko is the same drug as Tysabri, but it’s not. They need to admit that there’s an issue here and that Tyruko doesn’t suit everybody. Tyruko was awful for me – awful. There can’t be a blanket switch of patients on to it.
“Some people who were absolutely fine on Tysabri are now suffering serious side-effects and are relapsing; for example, their legs aren’t working and they are in pain. Half the Charing Cross patients who were switched over have been switched back – what does that tell you?
“I want NHS England to investigate further because too many people are having side-effects. I get that they need to save money. But don’t mess around people who are stable on Tysabri and who have serious side-effects if they come off it, and who have MS, which can be a life-limiting illness.”
