Starting Nexviazyme (avalglucosidase alfa-ngpt)Your first 90 days with pompe disease: the steps, the dates and who to call
Trial Friendtrialfriend.com
How you take it
An infusion into a vein every 2 weeks that takes about 4 to 7 hours. The dose is set by your weight.
Before your first dose
- A lab test or a genetic test that confirms late-onset Pompe disease. Your insurance may ask for the report.
- Your current weight, because it sets the dose and the size of the bag. Tell the doctor's office if your weight changes.
- Your insurance approves the medicine. CareConnectPSS, the drugmaker's support program, can help. Call 1-800-745-4447 and press 3.
- If you have insurance through work or a private plan, ask about QuickStart. It may let you start for free while the plan decides.
- The first infusion is booked at a place that is ready to treat a serious allergic reaction.
- You may get allergy, fever or steroid medicine before each infusion. Plan for a long day, since infusions run for hours.
The first 90 days
- Before the first infusionSign up with the support program, insurance check
- Once approved, or on QuickStartApproval, then booking the first infusion
- Day 1Day 1: first infusion, starting slow and speeding up
- Day 15Infusion 2
- Day 29Infusion 3
- Day 43Fourth infusion, and refill reminders from Sanofi
- Day 57Infusion 5
- Day 71Infusion 6
- Day 85Infusion 7
Trial Friend, trialfriend.com. From the Nexviazyme FDA label dated June 5, 2025 and the drugmaker's program, checked November 10, 2026. Not medical advice: Trial Friend is not a medical provider, and your doctor decides your dose and tests.