Starting Soliris (eculizumab)Your first 90 days with neuromyelitis optica spectrum disorder (NMOSD): the steps, the dates and who to call

How you take it

An infusion into a vein from a healthcare provider. You get 1 infusion a week for the first 5 weeks, then 1 every 2 weeks. Each one usually takes 35 minutes, and staff watch you for at least 1 hour after.

Before your first dose

• A blood test that shows AQP4 antibodies, because Soliris is approved for NMOSD only in adults who have them.
• Meningitis shots, the ACWY shot and the MenB shot, at least 2 weeks before your first infusion. Your doctor checks whether older shots still count.
• If you cannot wait 2 weeks, the label says you get antibiotics and the shots as soon as possible.
• Tell your doctor if you have a fever or an infection. The label says Soliris is not started during a serious meningitis infection that has not cleared.
• Ask your neurologist whether you also need a pneumonia shot or a Hib shot.
• Keep your Patient Safety Card with you during treatment and for 3 months after your last dose.
• Sign up with Alexion OneSource, the drugmaker's support program, for help with insurance and finding a place for the shots.
• After your insurance approves, a clinic or office in the safety program books your first 5 weekly visits.

The first 90 days

1. 4 weeks beforeOneSource enrollment and the insurance check
2. 3 weeks beforeVaccines done, or scheduled
3. 2 weeks beforeMeningitis shots done, at least 2 weeks before your first infusion
4. Week beforeApproval, then booking a certified site
5. Day 1Day 1: first infusion (900mg), then at least 1 hour of watching
6. Day 8Day 8: second weekly infusion
7. Day 15Day 15: third weekly infusion
8. Day 22Day 22: fourth weekly infusion
9. Day 29Day 29: fifth infusion, the first 1,200mg dose
10. Day 43, then every 14 daysOne infusion every 2 weeks from here
11. Day 90Three months in