Overview | Schedule | Side Effects | Monitoring | Tips | Patient Assistance | Emotional Wellness | Drugs | References
Treatment Name: Avapritinib (Ayvakit®)
How does avapritinib (Ayvakit®) work?
Avapritinib is a Tyrosine Kinase Inhibitor (TKI) that is designed to shut off a mutated protein called “KIT”, specifically KIT D816V, that is known to cause increased production and activity of mast cells.
Avapritinib is also known as study drug name: BLU-285
Goals of avapritinib (Ayvakit®) therapy:
Avapritinib is taken to decrease signs and symptoms of mastocytosis but is not commonly given with the goal of cure.
How is avapritinib therapy for systemic mastocytosis taken?
- Usual starting dose: 200 mg oral capsule by mouth once a day on an empty stomach
- Food increases absorption so it is best to take on an empty stomach to avoid an increase in side effects
- Dosage adjustments are common. For certain adverse reactions (also known as intolerable side effects), the dose may be reduced by your doctor to:
- 100 mg by mouth once a day for the first occurence
- 50 mg by mouth once a day for the second occurence
- 25 mg by mouth once a day for the third occurence
- Discontinue avapritinib therapy if you are unable to tolerate 25 mg by mouth once a day
- Do not make up for a missed dose if you are within 8 hours of your next scheduled dose
- Do not repeat a dose if vomiting occurs. Plan to resume therapy with the next scheduled dose and call your doctor for further instructions
Note: Individual doses may vary based upon your Doctor's recommendation, or drug availability.
Avapritinib is usually taken at home and is continued until the drug no longer works or until unacceptable side effects occur.
What are the most common side effects from avapritinib (Ayvakit®) for systemic mastocytosis?
In clinical studies, the most commonly reported side effects of avapritinib are shown here:
- Swelling in face, arms, or legs (79%)
- Low platelets [Thrombocytopenia] (64%)
- Low red blood cells [Anemia] (55%)
- Low white blood cells [Neutropenia] (54%)
- Diarrhea (28%)
- Nausea (24%)
- Fatigue and weakness (23%)
- Vomiting (18%)
- Headache (15%)
- Stomach pain (14%)
- Confusion or memory loss (14%)
- Changes in taste (13%)
- Dizziness (13%)
- Constipation (11%)
- Bloody nose (11%)
- Joint pain (10%)
- Trouble breathing (9%)
- Watery eyes (9%)
- Hair loss (9%)
- Decreased appetite (8%)
- Itching (8%)
- Skin rash (8%)
- Sinus infection (6%)
- Urinary tract infection [UTI] (6%)
- Pain in arms or legs (6%)
- Fluid in belly (5%)
- Flushing (4%)
- High blood pressure (4%)
- Hot flash (3%)
- Cough (3%)
- Heart failure (2%)
- Bleeding in intestines (1%)
- Gallstones (1%)
On average, 10-15% of patients discontinue treatment due to unacceptable side effects
Importantly, not all people who experience a side effect from avapritinib (Ayvakit®) will experience it in the same way. It may be mild in some or severe in others, depending upon the individual. Everybody is different. Additionally, side effects may vary over time. For some, side effects may be a reason to delay or switch treatment, reduce the dose, or avoid treatment with a certain medication altogether.
Side effects may be treatable when they occur or preventable by taking certain medications before they happen. When medications are taken to prevent a problem, this is known as prophylaxis, or "prophy" for short.
After starting treatment with avapritinib (Ayvakit®), be sure to come back and watch all of the side effect videos shown below. Each of these videos contain valuable information about side effect management that will hopefully help you to both feel better and stay out of the hospital.
Watch videos on common avapritinib (Ayvakit®) therapy side effects below
How often is monitoring with avapritinib (Ayvakit®) needed?
Labs (blood tests) may be checked before treatment, every 2 weeks for at least 8 weeks, then at the discretion of your doctor depending on your platelet counts. Labs often include: Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), plus any others your doctor may order.
How often is imaging with avapritinib (Ayvakit®) needed?
Imaging typically is not needed but may be checked if there are concerns for certain side effects. Imaging may include: X-rays, magnetic resonance imaging (MRI), or computerized tomography (CT) scans.
How might blood test results/imaging affect avapritinib (Ayvakit®) treatment?
Depending upon the results, your doctor may advise to continue avapritinib as planned, reduce the dose, delay treatment until the side effect goes away, or switch to an alternative therapy.
Questions to Ask Your...
A better understanding of your treatments will allow you to ask more questions of your healthcare team. We then hope that with the answers, you will get better results and have greater satisfaction with your care. Because we know it's not always easy to know what questions to ask, we've tried to make it easy for you!
Choose any healthcare provider below to see common questions that you may want to ask of this person. Then, either print each list to bring to your clinic visits, or copy the questions and send them as a message to your healthcare team through your electronic medical record.
What are the most important things to know about avapritinib (Ayvakit®) while receiving therapy?
- Avapritinib has been associated with memory impairment, confusion, and difficulty speaking. If any of these side effects occur, your doctor may recommend holding avapritinib therapy until the side effect goes away, or recommend a dosage reduction in avapritinib, or both
- Although rare, bleeding in the brain can occur while taking avapritinib. This risk is higher if your platelets tend to be low. Alert your doctor immediately if you experience severe headaches, changes in vision, nausea/vomiting, dizziness, confusion, or extreme weakness as these may be a sign of a brain bleed
- Avapritinib may affect fertility and sperm count. Talk to your doctor about the risk of infertility and steps that can be taken if you plan on having children in the future
- A pharmacist should ALWAYS review your medication list to ensure that drug interactions are prevented or managed appropriately
- Clinical trials may exist for systemic mastocytosis. Ask your doctor if any studies are currently enrolling in your area. If not, go to clinicaltrials.gov to search for other centers offering study medications
Patient Assistance & Co-payment Coverage
Patients under the age of 65 years, or those with private insurance plans:
If you have insurance and are looking for patient assistance or copay assistance for Avapritinib (Ayvakit®), we have provided links that may help.
Visit our Patient Assistance page and click the links to various patient assistance programs for help paying for Avapritinib (Ayvakit®). Depending upon your income, they may be able to help cover the cost of:
For Branded medications (may be available for generic medications too), check with the manufacturer to determine if a co-pay card is offered and if it could reduce your monthly copay.
- If you are uninsured, check with the manufacturer to determine if you are eligible to receive medication at no cost.
Medicare and Medicaid patients (Patients 65 years or older):
The clinic providing treatment will likely pre-authorize medications and immune therapies such as Avapritinib (Ayvakit®) and are the best source to help you understand drug cost.
- Ask to speak with a patient assistance technician or financial counselor at the clinic or hospital administering this therapy.
What is Emotional Wellness?
Emotional wellness is having a positive outlook balanced with a realistic understanding of current life events. This requires both an awareness and acceptance of your emotions. It is with this knowledge that you can develop a plan to take the necessary actions to positively impact your life.
Emotional wellness uses an ongoing process to continually reflect on the stressors of life in a constructive manner to move forward and create happiness.
Because emotional wellness is deeply connected with physical, social, and spiritual wellness, pursuing it often becomes particularly difficult in times of major illness. Despite this difficulty, working toward emotional wellness has been connected to improved treatment outcomes and a higher likelihood of achieving goals of therapy.
Learn more about pursuing emotional wellness while receiving treatment with Avapritinib (Ayvakit®)