Starting Qalsody (tofersen)Your first 90 days with ALS with a SOD1 mutation: the steps, the dates and who to call

How you take it

One injection into the fluid around the spine (a spinal tap), given at a clinic. The first 3 come 2 weeks apart, then one every 4 weeks.

Before your first dose

• A genetic test that shows a change in the SOD1 gene. Qalsody is only for ALS with this gene change.
• A clinic with a doctor or team who does spinal taps. Ask where the doses will be given and who gives them.
• Ask whether to bring breathing equipment or a ventilator to each visit, and how long to rest afterward.
• Your insurance approves the medicine. Biogen Support Services, the drugmaker's support program, helps with the paperwork and may cover some costs.
• Book all 3 starting visits at once, since they come 2 weeks apart.

The first 90 days

1. Weeks beforeSOD1 genetic test result in hand
2. 3 weeks beforeCall the drugmaker's support line
3. About 2 weeks beforeInsurance approval
4. Week beforeBook the first 3 visits
5. Day 1Dose 1, the first loading dose
6. Days afterThe days after a dose
7. Day 15Dose 2, the second loading dose
8. Day 29Dose 3, the last loading dose
9. Day 57, then every 28 daysDose 4, then one dose every 4 weeks
10. Day 85Dose 5