Starting Zavesca (miglustat)Your first 90 days with gaucher disease: the steps, the dates and who to call

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Fill in with your doctor's office

First dose date

Doctor who prescribed it

Doctor's office phone

Specialty pharmacy name

Specialty pharmacy phone

Call your healthcare provider right away about:

Numbness, tingling, pain or burning in your hands or feet; new hand tremors, or hand tremors you already have that get worse.

Also tell your doctor's office about:

Diarrhea, so your provider can talk with you about diet or an anti-diarrheal medicine
Weight loss
A pregnancy or a possible pregnancy, right away
Kidney problems, and all the medicines, vitamins and herbal supplements you take

Janssen, no Zavesca patient support program published1-800-526-7736

The drugmaker's support program, for questions about getting the medicine and paying for it. Answer calls from the specialty pharmacy; a missed call can delay your delivery.

Scan for your full plan, with every date added to your phone calendartrialfriend.com/p/zavesca

How you take it

One 100mg capsule 3 times a day, spread evenly through the day. Your doctor may start you on fewer capsules or lower the dose later.

Before your first dose

A nerve exam, because Zavesca can affect the nerves in the hands and feet. It is repeated about every 6 months.
A check of your kidneys. The starting dose is lower if your kidneys work less well.
A talk with your doctor if you are pregnant, could become pregnant or are breastfeeding.
Your insurance approves the medicine. Some plans want generic miglustat tried before brand Zavesca.
A specialty pharmacy ships the capsules to you. Zavesca is not sold at local pharmacies.

The first 90 days

Before the first fillNerve exam and kidney check
Once approvedApproval, then the pharmacy ships
Day 1First capsule
Day 15Diarrhea is common and decreases over time
Day 30Tell your doctor about any hand shaking
Day 31First refill
Day 61Second refill
Day 90Day 90
About 6 monthsNerve exam again, about 6 months in

Trial Friend, trialfriend.com. From the Zavesca FDA label dated April 20, 2023 and the drugmaker's program, checked November 11, 2026. Not medical advice: Trial Friend is not a medical provider, and your doctor decides your dose and tests.