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Finding help along the cystinosis journey

Horizon Patient Services: Support for you and your family

Horizon Patient Services is dedicated to improving the lives of people living with cystinosis. Your Horizon Patient Services support team includes a dedicated case manager and a patient access manager, who will work closely with you at every step—from disease education to finding sources of financial assistance, if needed.

Case Managers are there with PAMs as your support team to help people taking PROCYSBI feel confident about treatment.

Horizon Patient Services:

  • Works with your doctor’s office to get treatment started
  • Helps you work with insurance companies
  • Helps you stay on treatment through any life changes, such as moving or loss of insurance or employment
  • Connects you and your family to others living with cystinosis through communities and more

To get started with Horizon Patient Services, call 855-888-4004


Patient Access Managers: Because it’s personal

Your Patient Access Manager (PAM) is available to support you as a personal resource. Your PAM can help with insurance, travel and financial assistance, life transitions, and helping to link you to the cystinosis community. Your PAM is there for regular talks to answer questions and provide support to you and your family.

Your PAM is there to:

  • Guide you along your treatment journey
  • Answer your questions
  • Connect you with resources
  • Help prepare you for treatment

To get in touch with your PAM, just call 844-830-CARE (844-830-2273), and PAMs are also available via email or text, or in person.

You can also sign up to connect with a PAM


Helping with your PROCYSBI prescription

Horizon Patient Services can help get you started on PROCYSBI and will help you connect with the specialty pharmacy. PROCYSBI is only available through a specialty pharmacy and service provider for patients.

Your PROCYSBI prescription is filled and sent to your home through a package delivery service. PAMs can help keep patients on track with refills and answer any questions you have.

Talk to your doctor about a PROCYSBI prescription. The Prescription Enrollment Form found here is required, and your doctor will assist you in filling it out.

To avoid a gap in treatment, plan ahead. Mark your calendar to contact the specialty pharmacy to schedule a timely delivery of your refill.

Ordering refills

When to reorder PROCYSBI:

  • Before you run out
  • Before the discard date written by your pharmacist

When you fill your prescription for PROCYSBI, there should be exactly enough capsules in the bottle to last until your next refill arrives. Do not use expired PROCYSBI.


Impact Programs

There are educational programs available about living with cystinosis, where members of the cystinosis community can get together and:

  • Learn about cystinosis and treatment with PROCYSBI
  • Meet members of the cystinosis community
  • Share experiences
  • Ask questions

Find a list of Impact Programs taking place in cities across the country this year.


Show me upcoming Impact Programs

Choose the location that works best for you and your family:

  • Month: December


    Date: 12/8/18


    City: Atlanta


    State: GA


For more information on Impact Programs or to suggest a city near you for a future program, contact us at Impact@horizonpharma.com or call 602-953-2552.

Cystinosis resources and support

Visit the following for more support:

IMPORTANT SAFETY INFORMATION

PROCYSBI® (cysteamine bitartrate)
delayed-release capsules

Who should not take PROCYSBI?

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

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What should I tell my doctor before taking PROCYSBI?

Before you take PROCYSBI, tell your doctor if you:

Tell your doctor about all medicines that you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

Do not drive or operate heavy machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.

Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI? PROCYSBI can cause serious side effects, including:

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye or pain with eye movement.

The most common side effects with PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, breath odor, diarrhea, skin odor, tiredness, skin rash, headache, and problems with body salts or electrolytes.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PROCYSBI. Call your doctor for medical advice about side effects.

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

What is PROCYSBI (Pro-CIS-bee)?

PROCYSBI® (cysteamine bitartrate) delayed-release capsules is a prescription medicine used to treat a medical condition called nephropathic cystinosis, in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.

IMPORTANT SAFETY INFORMATION

PROCYSBI® (cysteamine bitartrate)
delayed-release capsules

Who should not take PROCYSBI?

Do not take PROCYSBI if you are allergic to penicillamine or cysteamine.

What should I tell my doctor before taking PROCYSBI?

Before you take PROCYSBI, tell your doctor if you:

Tell your doctor about all medicines that you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine.

What should I avoid while taking PROCYSBI?

Do not drive or operate heavy machinery until you know how PROCYSBI affects you. PROCYSBI can make you sleepy or less alert than normal.

Do not drink alcohol if you take PROCYSBI. Drinking alcohol while taking PROCYSBI may change how PROCYSBI works and may cause an increase in the amount of PROCYSBI in your blood that may cause serious side effects.

What are the possible side effects of PROCYSBI? PROCYSBI can cause serious side effects, including:

Tell your doctor right away if you develop any of the following symptoms while taking PROCYSBI: headache, buzzing or “whooshing” sound in the ear, dizziness, nausea, double vision, blurry vision, loss of vision, pain behind the eye or pain with eye movement.

The most common side effects with PROCYSBI include: vomiting, nausea, stomach (abdominal) pain, breath odor, diarrhea, skin odor, tiredness, skin rash, headache, and problems with body salts or electrolytes.

Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all of the possible side effects of PROCYSBI. Call your doctor for medical advice about side effects.

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

What is PROCYSBI (Pro-CIS-bee)?

PROCYSBI® (cysteamine bitartrate) delayed-release capsules is a prescription medicine used to treat a medical condition called nephropathic cystinosis, in adults and children 1 year of age and older. It is not known if PROCYSBI is safe and effective in children under 1 year of age.