RaptorCares® is designed to help patients with nephropathic cystinosis and their caregivers.
RaptorCares is a patient support program created with input from nephropathic cystinosis patients and caregivers who understand the challenges and successes you may experience. RaptorCares provides valuable services to support you every step of the way. Be sure to check back regularly for new and updated content.
For the general nephropathic cystinosis community, RaptorCares offers important information about nephropathic cystinosis as well as valuable tools to help you better manage the challenges along the way.
For people prescribed PROCYSBI® (cysteamine bitartrate) RaptorCares offers access and reimbursement support as well as ongoing nurse and e-mail communications to help you or a loved one stay on track with treatment.
Case managers are available from 8am-7pm CST
Nurses are available from 8am-5pm CST
Reimbursement Assistance for Insured Patients
- RaptorCares advocates on patients’ behalf to help ensure coverage for PROCYSBI® and to resolve contested claims
- Copay assistance will help reduce out-of-pocket expenses for eligible patients
Reimbursement Assistance for Underinsured Patients
- Qualified patients may be eligible for financial assistance to help cover premiums
- If no insurance coverage can be secured, the RaptorCares Patient Assistance Program may provide PROCYSBI ®directly to eligible patients
- Will assist in finding financial assistance to help cover travel-related expenses (eg, hotels, gasoline) which may be available for eligible patients who must travel for treatment
WBC Cystine Testing Assistance
- RaptorCares also offers reimbursement assistance to cover the cost associated with WBC cystine testing for eligible patients
Personalized support for eligible patients who are prescribed PROCYSBI®
For product shipments, please call:
Dedicated phone lines are available from 7am-7pm CST
IMPORTANT SAFETY INFORMATION FOR U.S. PATIENTS
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 2 years of age and older.
It is not known if PROCYSBI is safe and effective in children under 2 years of age.
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.
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:
- stomach (abdominal) pain
- breath odor
- skin odor
- skin rash
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 by contacting Horizon Pharma at 1-866-479-6742.
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.