Starting Zilbrysq (zilucoplan)Your first 90 days with generalized myasthenia gravis: the steps, the dates and who to call

How you take it

One shot under the skin once a day, at about the same time each day, from a prefilled syringe. The dose depends on your weight.

Before your first dose

• Meningitis vaccines (meningococcal), which means the ACWY shot and the MenB shot, finished at least 2 weeks before your first dose. Shots you had years ago may not be enough, so your doctor checks.
• Your doctor may also give you a pneumonia vaccine (pneumococcal).
• If your doctor decides you cannot wait 2 weeks, your doctor prescribes antibiotics and you get the vaccines as soon as possible.
• A blood test of your pancreas before the first shot.
• Your doctor gives you a Patient Safety Card. Keep it in your wallet the whole time you take Zilbrysq and for 2 months after.
• Your insurance approves the medicine. ONWARD, the drugmaker's support program, calls you and helps with costs.
• PANTHERx Rare, the only pharmacy that sends Zilbrysq, calls to set up delivery. Ask which phone number PANTHERx Rare will call you from.

The first 90 days

1. About 4 weeks beforeForms sent, vaccine plan made
2. Before day 1Blood test of your pancreas
3. 2 weeks beforeVaccines finished, 2 weeks before your first shot
4. Once approvedApproval, then the pharmacy's call
5. Day 1First injection, then one every day
6. Day 28Four weeks in
7. Day 29, then every 28 daysRefill, then every 28 days
8. About 3 months inAbout 3 months in, halfway through the first insurance approval