Reported by parents of children with AGS
Anifrolumab in AGS: Family Experience Survey Results
Anifrolumab is a newer treatment that blocks the receptor for type I interferon, the signal that is overactive in AGS. It is approved for adults with lupus and is now being prescribed off-label for some children with AGS. Here, families share what they’ve experienced so far.
Why families started
The reasons parents gave for starting anifrolumab, grouped into themes.
Reasons for starting
What families noticed
Improvements parents reported since starting anifrolumab, alongside how long each child had been on treatment when their family answered.
Improvements reported
Time on treatment
Each bar is one child, from their first infusion to when their family answered
Alongside other treatments
Many children were already taking a JAK inhibitor, such as baricitinib or ruxolitinib, before starting anifrolumab.
JAK inhibitor since starting anifrolumab
Treated before anifrolumab
Treatments children had received before, whether or not they still take them
Side effects and monitoring
What families reported about side effects, emergency visits and the tests their care team uses.
Side effects or complications
Each circle is one family
The one reported flare involved skin symptoms (chilblains and mild rashes) after the JAK inhibitor dose was lowered, and settled within a few weeks.
Emergency department visits
Each dot is one family, placed by its number of visits
What care teams are monitoring
Tests families said are being tracked (if known)
Who is receiving it
Children across many AGS types and ages, from infants to teenagers.
AGS type
Genetic diagnosis reported by parents
Age at first infusion
Each dot is one child
Where children are treated
Getting access
Getting anifrolumab approved and reaching treatment has been a struggle for some families.
Challenges families faced
What helped win approval
Steps that helped, among all families who responded
Who approved it
In families’ own words
In one sentence, to another AGS family
The biggest change they’ve seen
Getting treatment
About this data
- These are parents’ own reports, not results from a clinical trial. There is no comparison group, and families with good experiences may be more likely to respond.
- Some children had only just started treatment when their family answered, so early results may change.
- AGSAA grouped written answers into themes. Quotes are lightly edited for spelling, and names are removed.
- Anifrolumab (brand name Saphnelo) is approved in the US for adults with moderate to severe lupus. Its use in AGS is off-label.
- This page is not medical advice. Please talk with your child’s care team about whether anifrolumab could be right for your child.
Is your child receiving anifrolumab?
Every family who shares their experience makes this picture clearer for the next family, and for the doctors caring for them.
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