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Rare Disease Drug Pulled from Shelves After Reports of 20 Deaths in Japan

Rare Disease Drug Pulled from Shelves After Reports of 20 Deaths in Japan

You take a pill to stop your blood vessels from swelling. But when health officials see a cluster of unexplained deaths tied to that exact medication, they pull it off the shelves just to be safe.

Taking medication for a rare disease means you are already fighting a tough battle. You trust the pill in your hand. But when safety warnings flash across the globe, that trust gets shaken.

A drug called Tavneos is being pulled from pharmacies in the Republic of Ireland. Made by the US company Amgen, it treats adults with severe autoimmune diseases that cause blood vessels to swell.

The trouble started in Japan. A partner company reported 20 deaths among the 8,500 patients who took the drug since 2022. The makers point out they do not actually know if the pill caused those deaths. But European regulators decided it was not worth the risk and stripped the drug of its permission to be sold.

Now, Irish health authorities are pulling the remaining stock. Before this happened, about 60 people in Ireland were taking it.

The local health board made one thing very clear to the people taking it right now. Do not just throw your pills in the trash.

Patients currently taking the drug “should not stop treatment without first consulting with their doctors,” the HPRA warned. They noted the drug is only handed out by specialists, and some doctors had already started moving patients to different treatments anyway.

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The cleanup is spreading across Europe. France is set to start pulling all remaining batches on August 19. In the UK, regulators are still reviewing the risks.

For the people who rely on this drug to keep their immune system in check, the wait is stressful. The bottles are being boxed up. Now, patients just have to sit in their doctor’s office and figure out what comes next.

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