A quick summary of what to do in case of a reaction during ERT outside of hospital
- If the person feels unwell prior to having ERT, don’t start infusion and seek advice from Clinical Team during working hours
- If the person having ERT feels unwell during an ERT infusion or develops a rash - STOP THE INFUSION
- Patients should have a supply of supportive medications at home in order to treat the symptoms of a mild reaction as directed by the clinical team.
In the link below you can find out more about the severity of a reaction and what to do. It might be helpful to print out this two page pdf which has a flowchart of steps to take in the unlikely event of a reaction. Keep the printout with your infusion supplies so you can easily find it if it's ever needed. It has a space to write in important phone numbers.
Advice for Patients Developing a Reaction During ERT
This document is from the BIMDG (British Inherited Metabolic Diseases Group) website. More information can be found on this LSD Guidelines page (the link at the bottom of that page is the advice flowchart).