Starting Cuvrior (trientine tetrahydrochloride)Your first 90 days with wilson disease: the steps, the dates and who to call

How you take it

Tablets twice a day on an empty stomach, at least 1 hour before a meal or 2 hours after. Other medicines, food and milk stay at least 1 hour away from each dose.

Before your first dose

• Your doctor works out your Cuvrior dose from your penicillamine dose, using a table in the label.
• Penicillamine stops before Cuvrior starts. Your doctor tells you which day.
• Your doctor's office sends a Start Form to the Navigator Program, the drugmaker's support program. You sign it too.
• Your insurance approves the medicine. If the approval takes 5 days or more, the program may send a free 30-day supply.
• PANTHERx Rare, the only pharmacy that sends Cuvrior, calls to set up delivery. Answer calls from numbers you do not know that week.

The first 90 days

1. Weeks beforeStart Form sent, Care Coordinator assigned
2. Days beforeInsurance approval, then the pharmacy calls
3. Before day 1Your doctor tells you when penicillamine stops
4. Day 1First dose, and the first copper test
5. Day 14Two weeks in
6. Day 31, then every 30 daysRefill, if the first fill was 30 days
7. About 3 monthsBlood copper test at 3 months
8. About 9 months, then every 180 daysBlood copper test about every 6 months