Using CYSTADROPS
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THE PATIENT LIAISON (PL) PROGRAM: A PERSONALIZED RESOURCE*
A Patient Liaison (PL) provides one-on-one personalized support for individuals taking CYSTADROPS and their caregivers. Services are provided at no additional cost to you by Recordati Rare Diseases to help you manage your CYSTADROPS therapy. Enrollment is voluntary.
TO GET STARTED COMPLETE THE OPT-IN ENROLLMENT FORM:
COMPLETE THE OPT-IN FORMTHE PL WILL CONTACT YOU UPON RECEIPT OF THE OPT-IN FORM.
*These services are provided at no additional cost to you by Recordati Rare Diseases (the maker of CYSTADROPS) to help you manage your CYSTADROPS therapy. For medical care, please contact your doctor or nearest urgent care provider.
Si usted habla Español?
Por favor llene el formulario de inscripción al program de apoyo y asesoría para pacientes y cuidadores. Su PL- asesora personal se comunicará con usted.
SHARE YOUR STORY WITH OTHER INDIVIDUALS WITH CYSTINOSIS AND THEIR LOVED ONES
Your story is important and could possibly make a difference in someone’s life! By sharing your story, you may help people with cystinosis and their loved ones to find hope and strength on their journey. People in the cystinosis community may benefit from learning about your personal experiences with cystinosis, including your ocular symptoms and treatment with CYSTADROPS.
Participation is voluntary and can be stopped at any time. Click here to find out more about how you may be able to help others with your story.
ADVOCACY GROUPS FOR PATIENTS AND FAMILIES WITH CYSTINOSIS
If you or your child is diagnosed with cystinosis, you’ll want to find out as much as you can about the disorder. The following educational and advocacy groups provide information about cystinosis.
Cystinosis Research Network
The Cystinosis Research Network is dedicated to supporting and advocating research, providing family assistance, and educating the public and medical community about cystinosis.
Cystinosis Research Foundation
The Cystinosis Research Foundation is dedicated to finding better treatments and ultimately a cure for cystinosis and to educating the public and medical community to ensure early diagnosis and proper treatment.
The National Organization for Rare Disorders (NORD)
NORD is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.
FAQs
CYSTADROPS is a cystine-depleting agent indicated for the treatment of corneal cystine crystal deposits in adults and children with cystinosis.
It’s important to know that cystine-depleting oral medicines (medicines taken by mouth) do not reduce the build-up of cystine crystals in your cornea. These medicines are delivered to organs in your body through your bloodstream. But these medicines cannot reach your cornea since it does not have blood vessels. CYSTADROPS is an eye drop medicine that reduces the build-up of cystine crystals in your cornea over time with continuous treatment.
If you miss a dose, administer the missed dose as soon as possible and then use the drops at your next regular scheduled time.
Use CYSTADROPS exactly as your healthcare provider tells you to use it.
The active ingredient in CYSTADROPS, cysteamine, breaks down over time when exposed to light and air. Throw away any unused CYSTADROPS 7 days after first opening and start a new bottle.
Store CYSTADROPS in your refrigerator before opening it. After opening, keep CYSTADROPS at room temperature between 68°F to 77°F (20°C to 25°C). Do not refrigerate after opening.
The most common side effects are eye pain (stinging), blurred vision, eye irritation (burning), eye redness, discomfort at instillation site (sticky eyes or sticky eyelids), eye itching, watery eyes, medicine deposit on the eye lashes or around the eyes. Talk to your doctor if you are experiencing any side effects.
CYSTADROPS requires a prescription from your doctor. You will receive CYSTADROPS from the specialty pharmacy called Anovo. Anovo will contact you by phone and then will ship your medicine to you. Be sure to return all calls from Anovo to make sure you get your medicine when you need it.
In most cases you will receive 4 weeks (4 bottles) of CYSTADROPS at one time. Anovo will ship the bottles in a refrigerated container. Be sure to keep your medicine in the refrigerator until it’s time to use it.
Yes. A copay assistance program and a patient assistance program can help eligible patients with the cost of CYSTADROPS. The specialty pharmacy Anovo (866-925-6212) can determine if you qualify for these programs.
Call the specialty pharmacy Anovo (866-925-6212) if you have questions about CYSTADROPS.
