The Foundation has been made aware that some families have recently been having difficulty receiving cysteamine eye drops at the correct dose of 0.55%. We have made enquiries to various different organisations into this and it appears that problems are arising due to the eye drops being an unapproved medication.
All approved medications in the UK are listed in the British National Formulary (BNF), a book that doctors use in the prescription of medications. According to the BNF, mercaptamine eye drops are approved at 0.11%, and not the therapeutic effective concentration of 0.55%. This has led to some patients receiving the incorrect concentration of 0.11% eye drops, which have little or no benefit in reducing the cystine accumulation in the eyes.
The Foundation has made a number of enquiries into this, but it appears that until the eye drops are approved these problems may continue to occur. Therefore when requesting eye drops from your doctor it is important to ask for the prescription to state that they are for ‘mercaptamine 0.55%’. This should then mean that you will receive the correct concentration of eye drops from the pharmacy.
If you continue to have difficulties, talk to your health care professional or contact us at the Cystinosis Foundation UK for advice.