Starting Lumizyme (alglucosidase alfa)Your first 90 days with pompe disease: the steps, the dates and who to call

How you take it

An infusion into a vein every 2 weeks that takes about 4 hours, at a dose set by body weight.

Before your first dose

• A lab test or a genetic test that confirms Pompe disease, since your insurance may ask for the report.
• For a baby with infantile-onset Pompe disease, an early blood test called CRIM, and a specialist who knows how to manage antibodies.
• A blood sample before the first infusion, so later antibody tests have a starting point.
• Current weight, because it sets the dose and the size of the infusion bag.
• Your insurance needs to approve the medicine, and CareConnect, the drugmaker's support program, can help at 1-800-745-4447, option 3.
• The first infusion is booked at a place that is ready to treat a serious allergic reaction.

The first 90 days

1. Before the first infusionSign up with the support program, insurance check
2. Before the first infusionBlood tests before the first infusion
3. Day 1Day 1: first infusion, starting slow and speeding up
4. Day 15Infusion 2
5. Day 29Infusion 3
6. Day 43Fourth infusion, and refill reminders from Sanofi
7. Day 57Infusion 5
8. Day 71Infusion 6
9. Day 85Seventh infusion, and antibody blood tests as the doctor orders