Continuing Treatment

Fabrazyme^® (agalsidase beta) enzyme replacement therapy may be a lifelong part of your treatment for Fabry disease.

For people with Fabry disease, regular treatment every two weeks with the replacement enzyme is essential for maintaining reduced GL-3 levels.

In addition, talk to your doctor before you stop taking any other medications. While your doctor may determine that you need less of some medications, others may still be necessary.

^{Plan Ahead for Moves and Travel}

Going on vacation? To college? Moving? It's important to continue treatment with Fabrazyme. Plan ahead so you don't miss infusions. Talk to your doctor about arranging for treatment at your destination.

^{Infusion Scheduler}

You may find it helpful to keep track of when your Fabrazyme infusions are scheduled so that you don’t miss treatment. Use the Infusion Scheduler tool to create a printable schedule that you can fill in.

^{Notify your Employer of Scheduled Treatment}

Since Fabrazyme may be a long-term commitment to treatment for your condition, infusions are likely to be a regularly-scheduled event in your life. Infusions may need to occur during work hours. You may wish to send a letter to your employer to help them better understand your condition and need for regular treatment.

Here is an example letter that can help you explain your medical condition to your employer. This can be personalized using Microsoft^® Word. Wherever you see notes in parentheses, you can fill in the information that pertains to your situation.

^{What Happens if You Miss an Infusion?}

If you miss an infusion, talk to your doctor about rescheduling your appointment. Regular infusions every two weeks are very important since your body does not produce enough of the alpha-GAL enzyme necessary to control the build-up of GL-3.

^{Monitoring Progress}

Just as Fabry disease affects different people differently, responses to treatment will vary from person to person, as well. Your physician will likely want to see you regularly to check how you are responding to Fabrazyme treatment and to assess your overall health. Your physician may also have recommendations about nutritional changes in your diet or changes in exercise or activity levels.

You can play a role in monitoring your own progress, as well. Complete the Talk to Your Doc Report (PDF) and share it with your physician. Open communication with your team of health care professionals is important so you can receive appropriate care.

^{Annual Comprehensive Visits}

In addition to regular visits to your doctor, it is recommended that most people with Fabry disease have a comprehensive medical evaluation every year. These annual visits are important because they allow you to be seen by a variety of specialists, who can monitor how Fabry disease and treatment are affecting different parts of your body.

Contact Genzyme Medical Information at 800-745-4447 or 617-768-9000, option 2 for more information on centers that have experience treating patients with Fabry disease.