Talking to Others about Cerezyme
Because Type 1 Gaucher disease is rare, friends, coworkers, and teachers may be unfamiliar with it. Providing them with accurate information can help them understand what you are going through and how they can help. The information on this web site is a good place to start.
Talking to Employers or Coworkers
Some companies have employee assistance programs that can connect employees to a qualified professional who can help parents deal with the stress of having a child who is ill and talking to supervisors about the need for time off for medical care. These services may also be able to direct employees to other services that may help. Patient advocacy groups may be able to connect you to other families who have experienced similar problems and who can provide helpful information [see the Resources section of this web site].
Talking to Teachers and School Administrators
Parents frequently are in a position of asking teachers to do things that go against the norm of the school, such as absences for infusions or requests to skip certain sports activities. Without approval from their supervisors, teachers may not be able to make changes that you are requesting. Teachers’ superiors may not always be knowledgeable about the needs of students with Type 1 Gaucher disease. It is important to provide information and give them time to adjust to your requests. See how you can support them as they adjust to the new expectations you are requesting.
Indication & Usage
Cerezyme® (imiglucerase for injection) is indicated for long-term enzyme replacement therapy for pediatric and adult patients with a confirmed diagnosis of Type 1 Gaucher disease that results in one or more of the following conditions:
- anemia (low red blood cell count)
- thrombocytopenia (low blood platelet count)
- bone disease
- hepatomegaly or splenomegaly (enlarged liver or spleen)
Important Safety Information
Approximately 15% of patients have developed immune responses (antibodies) to Cerezyme during the first year of therapy. These patients have a higher risk of an allergic reaction (hypersensitivity). Your doctor may periodically test for the presence of antibodies. Serious allergic reactions (anaphylaxis) have been reported in less than 1% of patients. Symptoms suggestive of allergic reaction happened in approximately 7% of patients, and include itching, flushing, hives, swelling, chest discomfort, shortness of breath, coughing, cyanosis (a bluish discoloration of the skin due to diminished oxygen), and low blood pressure. If you have had an allergic reaction to Cerezyme, you and your doctor should use caution if you continue to receive treatment with Cerezyme.
High blood pressure in the arteries of the lungs (pulmonary hypertension) and pneumonia have been observed in less than 1% of patients during treatment with Cerezyme. These are also known complications of Gaucher disease regardless of treatment. If you experience symptoms such as shortness of breath or chest pain, with or without fever, contact your doctor.
Approximately 14% of patients have experienced side effects related to treatment with Cerezyme. Some of these reactions occur at the site of injection such as discomfort, itching, burning, swelling or uninfected abscess. Other side effects, each of which was reported by less than 2% of patients, include nausea, abdominal pain, vomiting, diarrhea, rash, fatigue, headache, fever, dizziness, chills, backache, and rapid heart rate. Temporary swelling in the legs has also been observed with drugs like Cerezyme.
Please see Full Prescribing Information (PDF).