Talking with Your Healthcare Team

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.

Be Prepared

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:

  • All your symptoms, when they began, how often you experience them, and how they’ve changed
  • The medications you're taking
  • Your medical history
  • Any other problems you are experiencing

Stay Educated

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.

Maintain Openness

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.

Understand Your Treatment

Make sure you understand the treatment your doctor has prescribed. Here are a few questions you might want to ask about your therapy and medications:

  • How and when should it be taken?
  • What are the side effects?
  • How will it interact with other medications?
  • How much will it cost?
  • Is it covered by my insurance?

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. You can also report them to Sanofi Genzyme by calling our Medical Information group at 800-745-4447, option 2.

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).


  • If you or your child is taking Lumizyme, you should know that severe and potentially life-threatening allergic-type reactions known as anaphylaxis or severe hypersensitivity reactions, and other severe reactions related to the immune system may occur during and after Lumizyme treatment. Reactions may include, for example, kidney dysfunction, extreme difficulty breathing, shallow breathing, abnormal heart rate, low blood pressure, or throat tightness (including face, tongue and lip swelling) and skin lesions.
  • If you or your child experiences these severe reactions, you may require close observation during and after Lumizyme administration. You should discuss with your physician the signs and symptoms of anaphylaxis and hypersensitivity reactions and seek immediate medical care should they occur. Anaphylaxis or severe hypersensitivity reactions are potentially very dangerous. If such a reaction is severe enough, your doctor may decide to immediately discontinue the infusion and provide immediate medical care. Appropriate medical support measures may be administered when you are being infused with Lumizyme.
  • If your child has a current respiratory condition or illness and has compromised breathing or heart function due to Pompe disease, there may be risk of acute worsening of heart and/or lung function with Lumizyme due to the fluid of the infusion, and your doctor may decide that close observation during and after Lumizyme administration may be necessary.


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: Since Lumizyme is a protein, it is the possible that patients receiving it develop antibodies. Some patients who develop high IgG antibody levels that last for a while may have reduced response to Lumizyme. 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.


If you are pregnant, you should use Lumizyme only if your doctor has determined that its use outweighs any risks to your unborn child.

You may report side effects to the FDA at 1-800-FDA-1088.

Please see the Full Prescribing Information for complete details, including boxed WARNING.