Starting Ultomiris (ravulizumab-cwvz)Your first 90 days with paroxysmal nocturnal hemoglobinuria (PNH): the steps, the dates and who to call

How you take it

An infusion into a vein from a healthcare provider. You get a starting dose and a second dose 2 weeks later. After that, it is every 8 weeks at 20kg (about 44 pounds) or more, and every 4 weeks below that weight. The dose depends on weight.

Before your first dose

• 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.
• For a child, the label also calls for a pneumonia shot and a Hib shot.
• Tell your doctor if you have a fever or an infection. The label says Ultomiris is not started during a serious meningitis infection that has not cleared.
• If you take Soliris now, your first Ultomiris infusion is timed to your next scheduled Soliris dose.
• Keep your Patient Safety Card with you during treatment and for 8 months after your last dose.
• Sign up with Alexion OneSource, the drugmaker's support program, for help with insurance and costs. With private insurance, you may pay as little as $0.
• After your insurance approves, a clinic or infusion service in the safety program books your first visit.

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, then at least 1 hour of watching
6. Day 15Day 15: second infusion, 2 weeks after the first
7. Day 43, then every 28 daysUnder 20kg (about 44 pounds): one infusion every 4 weeks from here
8. Day 71, then every 56 daysAt 20kg (about 44 pounds) or more: one infusion every 8 weeks from here
9. If Ultomiris is stoppedClose monitoring for at least 16 weeks
10. Day 90Three months in