‘It was awful for me’: one MS patient shares her experience with Tyruko
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.”
Thousands of children in England accused of witchcraft in past decade
Thousands of children in England have been accused of witchcraft over the past decade, according to new figures that come alongside a film released on Monday.Faith-based abuse is a worldwide phenomenon but experts found 14,000 social work assessments linked to witchcraft accusations since 2015. In the year running to March 2024 alone, there were 2,180 assessments linked to witchcraft.The statistics, compiled by the National FGM Centre, come as the film Kindoki Witch Boy is released, telling the story of Mardoche Yembi, 33, who was accused of witchcraft as a child growing up in north London and subjected to an exorcism. Its release date also marks the 25th anniversary of the death of Victoria Climbié, an eight-year-old girl who was tortured after accusations of witchcraft were levelled against her
MS patients suffer side-effects after NHS England switches to cheaper drug
Scores of people with multiple sclerosis (MS) have suffered debilitating side-effects after being put on to a cheaper new drug as part of an NHS drive to save money.About 170 MS patients at Charing Cross hospital in London have had complications, including a relapse of their illness, after being switched from Tysabri to a different drug called Tyruko, made by the pharmaceutical company Sandoz.In a handful of cases, the people affected developed such serious symptoms that they had to be taken to hospital for treatment. Patients have told doctors about side-effects including an inability to use their legs, other mobility problems, fatigue, pain and sudden weight gain.It is unclear how widespread the adverse reactions to Tyruko are
‘It was awful for me’: one MS patient shares her experience with Tyruko
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
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Holly Udobang is packing the last bag: a sleeping mat, gloves, woolly hat, waterproof poncho, hand warmers. It’s the sort of kit that teenagers might need for a Duke of Edinburgh trip.But this bag is for young homeless people, to give them a fighting chance of getting some sleep on the streets of London. Holly and her colleagues at the New Horizon Youth Centre are packing them to give to the young people they now have to turn away every day, as an increasing number of emergency shelters shut their doors.“Things are going backwards,” says Phil Kerry, New Horizon’s chief executive
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