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

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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

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    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.

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      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: May
          • Date: 5/4/19
          • City: Rochester
          • State: NY
          • Month: May
          • Date: 5/18/19
          • City: Chicago
          • State: IL
          • Month: June
          • Date: 6/1/19
          • City: Sacramento
          • State: CA

          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.

          What should I tell my doctor before taking PROCYSBI?

          Before you take PROCYSBI, tell your doctor if you:

          • drink alcohol
          • have a skin rash or bone problems
          • have or have had stomach or bowel (intestinal) problems including ulcers or bleeding
          • have a history of seizures, lack of energy, unusual sleepiness, depression or changes in your ability to think clearly
          • have liver or blood problems
          • have any other medical conditions
          • are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
          • are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI

          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:

          • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones. These changes may include stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.

          • Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Tell your doctor right away if you get a skin rash. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI.

          • Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate develop ulcers and bleeding in their stomach or bowel. Tell your doctor right away if you get stomach-area pain, nausea, vomiting, loss of appetite, or vomit blood.

          • Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.

          • Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.

          • Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early.

          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:

          • drink alcohol
          • have a skin rash or bone problems
          • have or have had stomach or bowel (intestinal) problems including ulcers or bleeding
          • have a history of seizures, lack of energy, unusual sleepiness, depression or changes in your ability to think clearly
          • have liver or blood problems
          • have any other medical conditions
          • are pregnant or plan to become pregnant. It is not known if PROCYSBI will harm your unborn baby. Tell your doctor right away if you think that you are pregnant. Talk with your doctor about the benefits and risks of taking PROCYSBI during pregnancy.
          • are breastfeeding or plan to breastfeed. You should not breastfeed during treatment with PROCYSBI. Talk with your doctor about the best way to feed your baby if you take PROCYSBI

          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:

          • Skin, bone, and joint problems. People treated with high doses of cysteamine bitartrate may develop abnormal changes of their skin and bones. These changes may include stretch marks, bone injuries (such as fractures), bone deformities, and joint problems. Check your skin while taking PROCYSBI. Tell your doctor if you notice any skin changes or problems with your bones or joints. Your doctor will check you for these problems.

          • Skin rash. Skin rash is common with cysteamine bitartrate and may sometimes be severe. Tell your doctor right away if you get a skin rash. Your dose of PROCYSBI may need to be decreased until the rash goes away. If the rash is severe, your doctor may tell you to stop taking PROCYSBI.

          • Stomach and bowel (intestinal) problems. Some people who take other medicines that contain cysteamine bitartrate develop ulcers and bleeding in their stomach or bowel. Tell your doctor right away if you get stomach-area pain, nausea, vomiting, loss of appetite, or vomit blood.

          • Central nervous system symptoms. Some people who take other medicines that contain cysteamine bitartrate develop seizures, depression, and become very sleepy. The medicine may affect how your brain is working (encephalopathy). Tell your doctor right away if you develop any of these symptoms.

          • Low white blood cell count and certain abnormal liver function blood tests. Your doctor should check you for these problems.

          • Benign intracranial hypertension (pseudotumor cerebri) has happened in some people who take immediate-release cysteamine bitartrate. This is a condition where there is high pressure in the fluid around the brain. Your doctor should do eye examinations to find and treat this problem early.

          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.