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Ravicti(R) and Syringes

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December 03. 2018
Reena D Patel

Hi there,

Has anyone started using Glycerol Phenylbutyrate? 

I understand we need to use a new oral syringe daily - these are not reimbursable by our Health Service in Ireland - patients have the option to purchase an oral syringe for between 30 and 50c - not a great option

What are other centres doing?  (maybe this isn't an issue in the UK)




June 13. 2019
Will Batten

Hi Reena,

Not such an issue for our PEG patients as they get heaps of syringes from the feeds company.  Here is Bristol for our oral patients we've made a judgement call that as long as the syringe is dry it can be reused.  Water and Ravicti contact can cause degradation.  This can include advising using syringes in rotation e.g. allowing x number of days for syringe to be completely dry after washing/rinsing before reusing.

(Off the record) I spoke with someone at SOBI and they didn't seem too worried we weren't following syringe/day advice.  Obviously advised following SPC where possible.  They also mentioned they were going to look into changing this advice so watch this space I suspect.



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