Orphan Europe’s Cystadrops® are now available on prescription in the UK. They are described as ‘a unique viscous eye drops solution, indicated for the treatment of corneal cystine crystal deposits in adults & children from 2 years of age with Cystinosis’.
The formulation of Cystadrops® allows four instillations per day which should considerably favour patient’s compliance with the treatment and decrease ophthalmic complications for all patients suffering from cystinosis. Also, they do not require refrigeration once opened, which should make it easier for patients to comply with the required dosing regime (note though that refrigeration is required before opening).
These are the only licensed eye treatment for cystinosis so should be the only prescribed treatment (other products available are unlicensed). Please speak to your / your child’s consultant about this new treatment, which has been available on prescription since 16th October 2017. If you are having difficulty getting this medication please let us know.