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Overview: Zokinvy is used for Progeria and certain types of Progeroid Laminopathies, which are rare genetic conditions that cause rapid body aging and shortened lifespan. The medicine works by stopping the buildup of an abnormal protein. Common side effects include nausea, vomiting, and diarrhea. Tell your health care provider about all medicines that you take before taking Zokinvy. Call your health care provider right away if you faint or have dizziness, fast or unusual heartbeat, unusual swelling, fever, vision changes, or unusual bleeding or bruising. Get emergency help if you have trouble breathing or chest pain.

Uses

What is Zokinvy used for?

Zokinvy (lonafarnib) is commonly used to lower the risk of death in people with Hutchinson-Gilford Progeria Syndrome (HGPS), also known as Progeria. This medicine is also used to treat certain types of Progeroid Laminopathies, called processing-deficient Progeroid Laminopathies. These are rare genetic conditions that cause rapid body aging and shortened lifespan.

Zokinvy may also be used for other conditions as determined by your health care provider.

How does Zokinvy work (mechanism of action)?

People with Progeria or processing-deficient Progeroid Laminopathies have a gene change that makes an abnormal protein called progerin or progerin-like proteins. Use of this protein by your body causes damage to your cells. Zokinvy inhibits an enzyme, which prevents the build up of progerin or progerin-like proteins in your body to lower your risk of death.

How is Zokinvy supplied (dosage forms)?

Brands and other names

  • Zokinvy

Dosage forms and strengths

  • 50 mg oral capsules
  • 75 mg oral capsules

How should I store Zokinvy?

Zokinvy should be stored at room temperature, between 68 F and 77 F (20 C and 25 C). It can be exposed to temperatures between 59 F and 86 F (15 C and 30 C) for shorter periods of time, such as when transporting it. Store in a cool, dry place.

Side Effects

What are the most common side effects of Zokinvy?

The most common side effects of Zokinvy are listed below. Tell your health care provider if you have any of these side effects that bother you.

  • Nausea and vomiting
  • Infection
  • Diarrhea
  • Loss of appetite and weight loss
  • Tiredness
  • Stomach pain
  • Muscle or joint pain
  • Electrolyte imbalance (see below)
  • Headache
  • Bone marrow suppression (see below)
  • Cough
  • Increased blood pressure (see below)

There may be other side effects of Zokinvy that are not listed here. Contact your health care provider if you think you are having a side effect of a medicine. In the U.S., you can report side effects to the FDA at www.fda.gov/medwatch or by calling 800-FDA-1088. In Canada, you can report side effects to Health Canada at www.health.gc.ca/medeffect or by calling 866-234-2345.

What are the serious side effects of Zokinvy?

While less common, the most serious side effects of Zokinvy are described below, along with what to do if they happen.

Severe Allergic Reactions. Zokinvy may cause allergic reactions, which can be serious. Stop taking Zokinvy and get help right away if you have any of the following symptoms of a serious allergic reaction.

  • Breathing problems or wheezing
  • Racing heart
  • Fever or general ill feeling
  • Swollen lymph nodes
  • Swelling of the face, lips, mouth, tongue, or throat
  • Trouble swallowing or throat tightness
  • Itching, skin rash, or pale red bumps on the skin called hives
  • Nausea or vomiting
  • Dizziness, feeling lightheaded, or fainting
  • Stomach cramps
  • Joint pain

Heart Rhythm Changes. Zokinvy may cause a rare, dangerous heart rhythm problem called QT prolongation and torsade de pointes. Some people have a higher risk of this, including people who are older, have other people in their family who have had these conditions, have low potassium or magnesium levels, or who take medicines that can prolong the QT interval. Tell your health care provider right away if you faint or have dizziness, light headedness, or changes in your heart rate or rhythm, such as a fast or skipping heartbeat.

Electrolyte Imbalance. Zokinvy can cause high or low levels of certain electrolytes such as potassium, sodium, and calcium. Severe cases of electrolyte imbalance can lead to serious problems or death. Keep all appointments to have your blood checked. Call your health care provider right away if you have any of the following symptoms.

  • Weakness, unusual tiredness, or sleepiness
  • Abnormal heart rhythm or heartbeat
  • Nausea, vomiting, or loss of appetite
  • Trouble breathing
  • Muscle cramps or twitching
  • Constipation
  • Headache
  • Confusion or dizziness
  • Weight gain
  • Changes in mood, alertness, or mental state
  • Seizures
  • Bone pain
  • Increased peeing frequency or thirst

Bone Marrow Suppression. Zokinvy may cause your bone marrow to not make enough cells. This can lead to low blood levels of important cells, such as red blood cells, white blood cells, platelets, and neutrophils. Bone marrow suppression can lead to infections or bleeding. This can be serious or even life-threatening. Keep all appointments to have your blood checked. Tell your health care provider right away if you have any of the following symptoms of bone marrow suppression.

  • Fever
  • Shortness of breath
  • Pale or yellowish skin
  • Easy bruising or bleeding
  • Frequent infection
  • Unusual weakness or tiredness
  • Dizziness, lightheadedness, or feeling like you are about to pass out
  • Headache
  • Fast or abnormal heartbeat

Kidney Damage. Kidney damage can happen when taking Zokinvy. Keep all appointments to have your blood checked. Call your health care provider right away if you have any of the following symptoms of kidney damage.

  • Reduced need to pee
  • Swelling in your feet, ankles, or legs
  • Weakness or unusual tiredness
  • Difficulty catching your breath or chest pain/pressure
  • Confusion
  • Nausea
  • Seizures

Vision Problems. Zokinvy may be associated with eye damage. Keep all appointments to have your eyes checked. Tell your health care provider if you notice any changes in your vision, including night vision.

Increased Blood Pressure (Hypertension). Zokinvy may increase your blood pressure or make it worse if you have a history of high blood pressure. Call your health care provider if your blood pressure increases while taking this medicine.

If you measure your blood pressure and the top number (systolic) is 180 mm Hg or higher or the bottom number (diastolic) is 120 mm Hg or higher, get medical attention right away. Increases in blood pressure may not be noticeable, but look out for and tell your health care provider right away if you have any of the following symptoms of severely high blood pressure.

  • Sudden severe headache
  • Chest pain
  • Dizziness or confusion
  • Trouble breathing
  • Nausea or vomiting
  • Blurry or other changes to vision
  • Anxiety
  • Buzzing in the ears
  • Nosebleed
  • Feeling of skipped heartbeats

Reduced Fertility. Zokinvy may make it difficult for you to get pregnant or get your partner pregnant. If you have concerns, talk to your health care provider.

Warnings & Precautions

Who should not use Zokinvy?

Allergies to Ingredients. People who are allergic to any of the following should not take Zokinvy.

  • Lonafarnib
  • Zokinvy
  • Any of the ingredients in the specific product dispensed

Your pharmacist can tell you all of the ingredients in Zokinvy.

Drug Interactions. Zokinvy should not be taken while you are using certain other medicines. Before taking Zokinvy, tell your health care provider about any prescription or over-the-counter (OTC) medicines, vitamins/minerals, herbal products, and other supplements you are using. See the Interactions section for more details.

What should I know about Zokinvy before using it?

Do not take Zokinvy unless it has been prescribed to you by a health care provider. Take it as prescribed.

Do not share Zokinvy with other people, even if they have the same condition as you. It may harm them.

Keep Zokinvy out of the reach of children.

Take the capsules whole with water. Do not chew the capsules.

If you cannot swallow whole capsules, the contents of a Zokinvy capsule may be mixed with a small amount of orange juice (one or two teaspoons per capsule) or applesauce (one or two teaspoons per capsule) in a clean cup. The mixture should be taken within 10 minutes of preparation. Do not use juice that contains grapefruit or Seville oranges, which may also be called bitter or sour oranges.

Zokinvy may also be mixed with certain other products (Ora-Blend SF or Ora-Plus) that are specifically designed for mixing with medicine. Ask your health care provider if you want these liquid products to take your doses.

If you can get pregnant or get a partner pregnant, use birth control. See the Pregnancy section for more information.

Nausea, vomiting, and diarrhea are common side effects. If these cause you to lose your appetite or weight, tell your health care provider right away. 

What should I tell my health care provider before using Zokinvy?

Tell your health care provider about all of your health conditions and any prescription or over-the-counter (OTC) medicines, vitamins/minerals, herbal products, and other supplements you are using. This will help them determine if Zokinvy is right for you.

In particular, make sure that you discuss any of the following.

Current and Past Health Conditions. Tell your health care provider if you have any of the following.

  • Abnormal heartbeat or heart rhythm
  • QT prolongation
  • Slow heartbeat (bradycardia)
  • Low magnesium or potassium levels
  • Kidney problems
  • Eye problems

Pregnancy. Zokinvy may cause harm to an unborn baby. Tell your health care provider if you are pregnant or plan to become pregnant. If you become pregnant, stop taking Zokinvy and contact your health care provider right away. 

Breastfeeding. It is not known if Zokinvy passes into breast milk. Tell your health care provider if you are breastfeeding or plan to breastfeed. Your health care provider will let you know if you should take Zokinvy while breastfeeding.

How can I get more information about Zokinvy?

For more information about Zokinvy, you can visit the drugmaker’s website at www.zokinvy.com or call them at 888-507-5206.

Interactions

Does Zokinvy interact with foods or drinks?

Zokinvy should be taken with food. Avoid foods containing grapefruit or Seville oranges (also known as bitter or sour oranges).

It is unknown if drinking alcohol will affect Zokinvy.

Does Zokinvy interact with other medicines (drug interactions)?

Always tell your health care provider about any prescription or over-the-counter (OTC) medicines, vitamins/minerals, herbal products, and other supplements you are using.

In particular, make sure that you discuss if you are using any of the following before taking Zokinvy.

  • Atorvastatin (Lipitor and others), lovastatin (Altoprev), or simvastatin (Flolipid, Zocor), which is a medicine to lower cholesterol
  • Dabigatran (Pradaxa), which is a blood thinner used to treat or prevent blood clots
  • Digoxin (Lanoxin), which is a medicine used to treat irregular heartbeat and some types of heart failure
  • Loperamide (Imodium A-D), which is a medicine for diarrhea
  • Midazolam (Nayzilam), which is a medicine used for seizures 
  • Any medicine that can cause QT prolongation, which is a potentially dangerous heart rhythm problem

Many other medicines may alter the blood levels of Zokinvy, and vice versa. Tell your health care provider about all medicines that you take or have recently taken.

This may not be a complete list of medicines that can interact with Zokinvy. Always check with your health care provider.

Does interact with other drugs you are taking?

Enter your medication into the WebMD interaction checker

Overdose/Missed Dose

What should I do if I accidentally use too much Zokinvy?

If you or someone else has used too much Zokinvy, get medical help right away, call 911, or contact a Poison Control center at 800-222-1222.

What should I do if I miss a dose of Zokinvy?

If you miss a dose and there are eight or more hours left until the next scheduled dose, take it with food as soon as you remember. If there are less than eight hours remaining before the next dose, skip the missed dose and only take the next dose. Do not take double or extra doses.