Regular communication with your healthcare providers about your Pompe disease can help make sure that you are getting appropriate care. By talking with your medical team, you can develop a close partnership that allows you to become an active participant in your care as you work together to make choices that are right for you. Here are some tips and guidelines for improving communication.
To make the most of visits with your healthcare providers, consider planning ahead. Whether it's your first meeting or you’ve been seeing the doctor for years, you may find it helpful to compile a list of your questions and concerns beforehand.
If it is your first visit to a new doctor, you may want to prepare the following information to share:
While there are many places to get information about Pompe disease and its management and treatment, your doctor is usually your primary source of information. It may help to write down any new information he or she gives you, or ask for written advice and instructions before you leave the appointment. The doctor also may have other educational materials to provide to you and your family.
The Internet can also be a valuable resource, and as you research online, you may want to print out any useful pages you find to discuss with your doctor. As you take in new information from any source, you may find it helpful to take notes and keep a running list of questions for your next doctor’s visit.
Being open is helpful to forming a good partnership with your healthcare team, even if it's sometimes uncomfortable. This may mean telling your doctor about symptoms that might be difficult for you to talk about, because new symptoms could mean your treatment plan needs to be adjusted. Or it might mean admitting that you have not understood something the doctor has told you—but clarifying any misunderstandings can help your doctor better understand your needs.
Don’t be embarrassed to ask your healthcare providers to define new words or explain any recommendations differently. It’s also a good idea to repeat what your doctor has told you in your own words, just to make sure you have understood everything. Remember, you can always ask further questions if you need more information or clarification.
Make sure you understand the treatment your doctor has prescribed. Here are a few questions you might want to ask about your treatment:
Be sure to contact your doctor right away if you suspect you might be having side effects from your Lumizyme treatment, or any other medication.
Additionally, if you hear about a new treatment or medication, you may want to ask your doctor for more information.
LUMIZYME® (alglucosidase alfa) is an enzyme replacement therapy for patients with Pompe disease (acid α-glucosidase (GAA) deficiency).
WARNING: RISK OF ANAPHYLAXIS, HYPERSENSITIVITY AND IMMUNE-MEDIATED REACTIONS, AND RISK OF CARDIORESPIRATORY FAILURE
Anaphylaxis and Hypersensitivity Reactions: Life-threatening anaphylaxis and hypersensitivity reactions have been observed in some patients during and after treatment with alglucosidase alfa. If such a reaction is severe enough, your doctor may decide to immediately discontinue the infusion and provide you with immediate medical care. Appropriate medical support and monitoring measures should be available during infusion.
Immune-Mediated Reactions: You or your child may be monitored for the development of systemic immune-mediated reactions while receiving Lumizyme. If these reactions occur, your doctor may discontinue the infusion and initiate appropriate medical treatment.
Risk of Acute Cardiorespiratory Failure: Infant Pompe patients with heart or breathing problems who are experiencing an acute respiratory condition may be at risk for increasing the seriousness of these problems as a result of Lumizyme administration due to the infusion fluid, and your child’s doctor may require additional monitoring for these infants.
Risk of Cardiac Arrhythmia and Sudden Cardiac Death during General Anesthesia for Central Venous Catheter Placement: Caution should be used when administering general anesthesia for the placement of a central venous catheter intended for Lumizyme infusion. Ventricular arrhythmias and slow heart rate resulting in cardiac arrest or death have been observed in infant Pompe patients with cardiac hypertrophy during general anesthesia for central venous catheter placement. Appropriate medical support and monitoring measures should be available during infusion.
Risk of Antibody Development: Patients with infantile-onset Pompe disease (IOPD) should be managed by a clinical specialist knowledgeable in immune tolerance induction in Pompe disease to optimize treatment. Some patients who develop high and sustained IgG antibody levels, including certain IOPD patients, may have a reduced response to Lumizyme.
Monitoring: Laboratory Tests: Patients should be monitored for IgG antibody formation every 3 months for 2 years and then annually thereafter.
The most frequently reported adverse reactions during Lumizyme studies in patients were allergy reactions and included: anaphylaxis, rash, fever, flushing/feeling hot, hives, headache, excessive sweating, nausea, cough, less oxygen in the blood, fast heart rate, rapid breathing, chest discomfort, dizziness, muscle twitching, agitation, bluish or purple skin, redness of skin, high blood pressure/increased blood pressure, facial paleness, chills, tremor, vomiting, fatigue, and muscle pain.
Please see the Full Prescribing Information for complete details, including boxed WARNING.