Starting Empaveli (pegcetacoplan)Your first 90 days with paroxysmal nocturnal hemoglobinuria (PNH): the steps, the dates and who to call

How you take it

One vial (1,080mg) put in under the skin twice a week at home, with a small pump or the EMPAVELI Injector you wear on your belly. A trainer from Apellis with a nursing background teaches you first.

Before your first dose

• Vaccines at least 2 weeks before your first dose: a pneumonia shot (pneumococcal) and meningitis shots (the ACWY shot and the MenB shot). Old shots may not be enough, so your doctor checks.
• If your doctor decides you cannot wait 2 weeks, the label says you get the vaccines as soon as possible and take antibiotics too.
• A Patient Safety Card from your doctor. Keep it in your wallet the whole time you take Empaveli and for 2 months after.
• On Soliris now? The label says you keep taking it for your first 4 weeks on Empaveli. On Ultomiris? You start within 4 weeks of your last dose.
• A Start Form for ApellisAssist, the drugmaker's support program, which can help you find the vaccines and with costs.
• Insurance approval, then PANTHERx, a specialty pharmacy, fills it and ApellisAssist sets up deliveries and lessons. Answer calls from numbers you do not know.

The first 90 days

1. 4 weeks beforeStart Form sent, vaccine plan made
2. 3 weeks beforeVaccines done, or scheduled
3. Week beforeInsurance approval, then delivery and lessons are set up
4. Day 1First dose, with training
5. Day 4 or 5Second dose of the week
6. End of week 4If you came from Soliris, your doctor tells you when to stop it
7. Day 29, then every 28 daysRefill, then about every 28 days
8. Weeks 4 to 6Ask about your LDH blood test, which can change how often you take it
9. Months 2 to 3Ask when your next meningitis shots are due