Starting Sohonos (palovarotene)Your first 90 days with fibrodysplasia ossificans progressiva (FOP): 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 the prescriber right away about:

New or worse depression, anxiety, mood changes, or thoughts of suicide or self-harm; a possible pregnancy, which the Medication Guide says means stopping Sohonos and calling at once.

Also tell your doctor's office about:

The first signs of a flare-up, such as pain, swelling, redness, warmth or stiffness, the same day
Any planned surgery, shot into a muscle, dental nerve block, fall or flu-like illness
Trouble seeing at night or in dim light
Very dry, cracked or peeling skin, or redness and swelling around a nail
Severe headache, nausea or vomiting, drowsiness, irritability or itching, which can be signs of too much
Any new medicine, vitamin or supplement, before starting it

IPSEN CARES866-435-5677

Monday to Friday, 8 AM to 8 PM Eastern

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/sohonos

How you take it

One dose by mouth once a day with food, at about the same time each day. The capsule can be opened onto a spoonful of soft food such as applesauce. The dose goes up for 12 weeks or longer during a flare-up, as the FOP specialist directs.

Before your first dose

Birth control for at least 1 month before the first dose, for anyone who could become pregnant, because Sohonos can cause birth defects.
A blood pregnancy test in the week before the first dose, for anyone who could become pregnant.
X-rays of the hand, wrist and knee for a child who is still growing, because Sohonos can stop bones growing early.
A check of every medicine, vitamin and supplement, since vitamin A, grapefruit and some antibiotics do not mix with Sohonos.
The doctor's office signs you up with IPSEN CARES, the drugmaker's support program, and the patient or a guardian signs too.
Insurance approves the medicine, and a specialty pharmacy calls to set up delivery.

The first 90 days

5 weeks beforeBirth control starts, if pregnancy is possible
4 weeks beforeIPSEN CARES enrollment and the insurance check
2 weeks beforeGrowth X-rays for a child still growing
Week beforeBlood pregnancy test
Days beforeThe specialty pharmacy ships
Day 1First dose, with food
Day 14Two weeks in: dry skin, lips and eyes
Day 29, then every 28 daysNew supply about every 4 weeks
Day 90Three months in: growth and spine checks ahead

Trial Friend, trialfriend.com. From the Sohonos FDA label dated September 24, 2026 and the drugmaker's program, checked November 9, 2026. Not medical advice: Trial Friend is not a medical provider, and your doctor decides your dose and tests.