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My Disturbing Encounter with Tyruko: A Personal Story of MS

Jonelle Roback, a 55-year-old retired tax accountant, is among a number of individuals with multiple sclerosis (MS) who have experienced severe side effects after being transitioned to a cheaper, new medication while under the care of the NHS. Roback shares her story after being switched from Tysabri to the “biosimilar” drug, Tyruko, in May of the previous year.

Having been on Tysabri since 2009 without any issues, Roback describes the medication as a “wonder drug” that kept her symptoms under control and allowed her to lead a normal life. However, during her visit to Charing Cross hospital for her infusion in May, she was informed that her medication would be changed to Tyruko without any explanation.

Almost immediately after the switch, Roback began to experience symptoms such as extreme fatigue, nausea, headaches, and weight gain (almost 10 kilograms). None of these side effects were present when she was on Tysabri. During her summer vacation, the additional weight made her look bloated.

Upon her return to Charing Cross hospital for her infusion in July, Roback expressed her dissatisfaction with the new drug to a nurse, who informed her that many other patients were also experiencing the same side effects. The hospital staff were keeping a record of these side effects, and the nurse advised Roback to write a letter describing her experience, which she did.

As a result of her writings, Roback discovered through social media that others had also faced similar challenges after being transitioned to Tyruko. While the Imperial NHS Trust, which operates Charing Cross, has been supportive of her and other affected patients, switching many of them back to Tysabri, NHS England claims that the issue is limited to Charing Cross. However, Roback sent a questionnaire to MS patients, receiving 52 responses from individuals in 15 different hospitals across England who likewise encountered similar side effects.

Roback firmly believes that Tyruko is not the same as Tysabri and urges NHS England to acknowledge this issue and explore alternative solutions, as swapping patients to Tyruko may not work for everyone. Some individuals who were previously stable on Tysabri have since faced severe side effects, including relapses; for instance, some individuals now struggle with leg functionality and are in pain. Around half of the patients who were initially switched to Tyruko at Charing Cross have been returned to Tysabri, indicating problem with the new medication.

Roback advocates for further investigation into the side effects experienced by patients to ensure the well-being of those with MS while acknowledging the need for cost savings within the NHS.

Source: https://www.theguardian.com/society/2025/feb/24/it-was-awful-for-me-one-ms-patient-shares-her-experience-with-tyruko

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