Information for the public
Pegzilarginase (Loargys) is available on the NHS. It is a possible treatment for arginase-1 deficiency (also called hyperargininaemia) in people 2 years and over.
Is this treatment right for me or my child?
Your healthcare professionals should give you clear information, talk with you about your or your child’s options, and listen carefully to your views and concerns. Your family can be involved too, if you wish. See our webpage on shared decision making.
Questions to think about
- How well does it work compared with other treatments?
- What are the risks or side effects? How likely are they?
- How will the treatment affect my or my child’s day-to-day life?
- What happens if the treatment does not work?
- What happens if I do not want to have treatment or do not want my child to have the treatment? Are there other treatments available?
Information and support
These organisations can give you advice and support:
- Metabolic Support UK, 0800 6523181
- Gene People, 0800 987 8987, email: helpline@genepeople.org.uk
- Genetic Alliance UK, 0300 124 0441
You can also get support from your local Healthwatch.
NICE is not responsible for the quality or accuracy of any information or advice provided by these organisations.
ISBN: 978-1-4731-9313-0
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