Starting Galafold (migalastat)Your first 90 days with fabry disease: the steps, the dates and who to call

How you take it

One capsule every other day at the same time of day, swallowed whole. Do not eat or have caffeine for 2 hours before and 2 hours after.

Before your first dose

• A genetic test that names the exact change in your GLA gene. Galafold is approved only for certain changes, called amenable.
• Your doctor checks that your gene change is on the drug label's list, and that it causes Fabry disease. A genetics expert may help.
• A kidney check. Galafold is not recommended if your kidney test (eGFR) is below 30 or if you are on dialysis.
• A full medicine check, including anything with caffeine, because caffeine lowers how much Galafold gets into your body.
• Your doctor's office sends a referral form to Amicus Assist, the drugmaker's support program, and you sign a consent form.
• A Case Manager calls you and the office, your insurance approves the medicine, and a specialty pharmacy mails it to your home.

The first 90 days

1. Weeks beforeThe variant is checked against the label
2. 2 weeks beforeReferral form, consent and the insurance request
3. 1 business day laterA Case Manager calls
4. Days beforeThe specialty pharmacy ships
5. Day 1First capsule, then a 4-hour fast window
6. Day 2A day off: no capsule, press out the white circle on the card
7. Day 3Second capsule, same time as day 1
8. Day 29, then every 28 daysStart a new pack, then about every 4 weeks
9. Day 90Three months in