SUPPORTING INDIVIDUALS, FAMILIES AND RESEARCHERS
IN THE CYSTINOSIS COMMUNITY

Eye Drops Supply Issues

We recently became aware that many patients have been unable to get any supply of the unlicensed 0.55% cysteamine hydrochloride eye drops they are prescribed.

We contacted Guy’s and St Thomas’ NHS Foundation Trust, who manufacture the drops, they told us that they are “currently out of stock of cysteamine hydrochloride 0.55% eye drops following a planned manufacturing shut down, which has been extended for various reasons”.

They do not expect to be able to have any new supply available until April at the earliest.

There is an alternative medication, called Cystadrops. This is a licensed product manufactured by Recordati Rare Diseases and so is not affected by the supply issues.

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