Ogsiveo
Ogsiveo (nirogacestat) is the first and currently only oral tablet approved by the FDA to treat desmoid tumors in adults who require treatment by mouth or injection. It needs to be taken twice a day, with or without a meal. Common side effects include diarrhea, rash, and nausea. If you have diarrhea for more than 3 days or other side effects that won't go away, let your healthcare team know. They might need to lower your dose or stop the medication altogether.
What is Ogsiveo (nirogacestat)?
What is Ogsiveo (nirogacestat) used for?
Treatment of progressing desmoid tumors (certain benign or noncancerous tumors) in adults
How Ogsiveo (nirogacestat) works
Ogsiveo (nirogacestat) is a gamma secretase inhibitor, meaning it blocks an enzyme (protein) called gamma secretase. This action helps to slow down the growth of desmoid tumors.
Drug Facts
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What are the side effects of Ogsiveo (nirogacestat)?
Common Side Effects
- Diarrhea (84%)
- Ovarian problems (75%)
- Rash (68%)
- Low levels of phosphate (65%)
- Nausea (54%)
- Feeling tired (54%)
- Higher sugar in urine (51%)
- Painful sores in the mouth (39%)
- Higher liver function tests (up to 33%)
- Headache (30%)
Other Side Effects
- Stomach pain
- Cough
- Low levels of potassium
- Hair loss
- Upper respiratory tract infection (e.g., common cold)
- Shortness of breath
Serious Side Effects
- Liver problems: nausea, vomiting, not feeling hungry, pain in the right side of the stomach, yellowing of the whites of the eyes or skin, dark-colored urine, light-colored stool
- Electrolyte imbalance: fast heart rate, muscle weakness, muscle pain, confusion
- Skin cancer: new skin growths, changes to the skin
Source: Prescribing Information
The following side effects have also been reported
Side effects that you should report to your care team as soon as possible:
- Allergic reactions—skin rash, itching, hives, swelling of the face, lips, tongue, or throat
- Liver injury—right upper belly pain, loss of appetite, nausea, light-colored stool, dark yellow or brown urine, yellowing skin or eyes, unusual weakness or fatigue
- Low phosphorus level—fatigue, muscle weakness or pain, bone or joint pain, bone fractures
- Low potassium level—muscle pain or cramps, unusual weakness or fatigue, fast or irregular heartbeat, constipation
- Ovarian problems—irregular menstrual cycles, hot flashes, night sweats, vaginal dryness
- Severe or prolonged diarrhea
Side effects that usually do not require medical attention (report these to your care team if they continue or are bothersome):
Pros and cons of Ogsiveo (nirogacestat)
Pros
Preferred treatment option for adults with progressing desmoid tumors
Available as a tablet you take by mouth
Can be taken with or without food
Cons
Diarrhea is a very common side effect
Can’t take while pregnant or breastfeeding
Has many interactions with other medications
Pharmacist tips for Ogsiveo (nirogacestat)
Tell your care team if you experience any side effects while taking Ogsiveo (nirogacestat) because the dose might need to be lowered or stopped. Tell your primary care provider right away if you have diarrhea that lasts longer than 3 days and doesn't get better after taking antidiarrheal medications.
Get your routine blood tests done on time while you’re taking Ogsiveo (nirogacestat). This is important to make sure that the medication isn't causing side effects like liver problems or electrolyte imbalances.
Ogsiveo (nirogacestat) can interact with many medications. Let your prescriber or pharmacist know what medications you're taking, including over-the-counter products and supplements, before you start Ogsiveo (nirogacestat). Talk with your care team if you have any questions about interactions with this medication.
Don't drink juices containing grapefruit or Seville oranges (also called bitter or sour oranges) during treatment with Ogsiveo (nirogacestat). Doing so can cause the body to absorb more of this medication, leading to a greater risk of side effects.
Ogsiveo (nirogacestat) can commonly cause nausea, which can lead to vomiting. If you vomit after taking a dose of Ogsiveo (nirogacestat), take the next dose at your regular scheduled time. Don't take two doses at the same time.
Frequently asked questions about Ogsiveo (nirogacestat)
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What are the risks and warnings for Ogsiveo (nirogacestat)?
Ogsiveo (nirogacestat) can cause some serious health issues. This risk may be even higher for certain groups. If this worries you, talk to your doctor or pharmacist about other options.
Diarrhea
In clinical studies, people who took Ogsiveo (nirogacestat) commonly experienced diarrhea. You might need to drink enough fluids to keep hydrated, since diarrhea can lead to dehydration. If you experience severe or watery diarrhea, fever, belly pain, loss of appetite, or nausea, let your care team know right away. Your care team might ask you to take antidiarrheal medications or lower your dose of Ogsiveo (nirogacestat).
Ovarian problems
Ogsiveo (nirogacestat) can affect your ability to have children. While it's not clear what the long-term effect is, it's possible that this medication can cause ovarian problems. If you plan to have children, talk with your care team about the benefits and risks of taking this medication. Tell your care team if you have any changes in your period or if you have symptoms such as hot flashes, night sweats, and vaginal dryness.
Liver problems
People who take Ogsiveo (nirogacestat) have reported higher liver enzymes (proteins), which may indicate liver problems. Make sure to get blood tests done while you take this medication so your care team can check your liver health. Let your healthcare provider know if you experience signs and symptoms of liver damage, such as upper right stomach pain, yellowing of the skin or whites of the eyes, or dark urine.
Risk of skin cancer
Rarely, people who take Ogsiveo (nirogacestat) might develop skin cancers. Your care team will do routine skin exams before and during treatment to make sure you aren't at risk for skin cancer. Let your primary care provider know if you notice any new skin growth or changes to your skin.
Electrolyte imbalance
Risk factors: Taking medications that lower potassium or phosphate levels (e.g., diuretics)
Ogsiveo (nirogacestat) can cause low levels of certain electrolytes, such as potassium and phosphate. Your care team will monitor your electrolyte levels regularly during treatment to make sure this medication is safe for you. In some cases, you might be asked to take a potassium or phosphate supplement. Let your care team know if you experience fast heart rate, muscle weakness, muscle pain, or confusion.
Harm to unborn baby
Taking Ogsiveo (nirogacestat) during pregnancy might raise the risk for death in unborn babies and loss of pregnancy. Because of this potential risk, if you're able to have a child, your primary care provider will ask you to take a pregnancy test. They'll also discuss birth control options during your treatment with this medication. Make sure to use an effective form of contraception while taking Ogsiveo (nirogacestat) and for one week after. If you're pregnant or are planning to become pregnant, discuss your treatment options with your care team.
Ogsiveo (nirogacestat) dosage forms
Typical dosing for Ogsiveo (nirogacestat)
The typical dose is 150 mg by mouth twice daily.
Your dose might differ if you have diarrhea for 3 days and longer, liver problems, or changes in certain electrolytes.
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What is the latest news about Ogsiveo (nirogacestat)?
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References
Best studies we foundGounder, M., et al. (2023). Nirogacestat, a γ-secretase inhibitor for desmoid tumors. The New England Journal of Medicine.
MedlinePlus. (2013). Desmoid tumor.
National Cancer Institute. (2019). Desmoid tumor.
National Comprehensive Cancer Network. (2024). Soft tissue sarcoma.
SpringWorks Therapeutics. (2024). Ogsiveo® (nirogacestat) tablets, for oral use [package insert].
U.S. Food and Drug Administration. (2023). FDA approves nirogacestat for desmoid tumors.
Wang, L., et al. (2023). Nirogacestat may offer hope to people with desmoid tumors. National Cancer Institute.
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