Cysteamine (By mouth)

Introduction

Cysteamine (sis-TEE-a-meen)

Treats a kidney problem that you were born with called nephropathic cystinosis.

Brand Name(s)

Cystagon

There may be other brand names for this medicine.

When This Medicine Should Not Be Used

You should not use this medicine if you have had an allergic reaction to cysteamine or penicillamine.

How to Use This Medicine

Capsule

  • Your doctor will tell you how much of this medicine to use and how often. Your dose may need to be changed several times in order to find out what works best for you. Do not use more medicine or use it more often than your doctor tells you to.
  • If your child is using this medicine, you may open the capsule and mix it in your child's food.
  • You may have to take supplements while using this medicine. Talk to your doctor about this.

If a dose is missed:

  • If you miss a dose or forget to use your medicine, use it as soon as you can. If it is almost time for your next dose, wait until then to use the medicine and skip the missed dose. Do not use extra medicine to make up for a missed dose.

How to Store and Dispose of This Medicine

  • Store the medicine in a closed container at room temperature, away from heat, moisture, and direct light.
  • Ask your pharmacist, doctor, or health caregiver about the best way to dispose of any outdated medicine or medicine no longer needed.
  • Keep all medicine away from children and never share your medicine with anyone.

Drugs and Foods to Avoid

Ask your doctor or pharmacist before using any other medicine, including over-the-counter medicines, vitamins, and herbal products.

Warnings While Using This Medicine

  • Make sure your doctor knows if you are pregnant or breastfeeding, or if you have liver problems, blood problems, epilepsy or seizures, or ulcer or bleeding of the stomach or intestine.
  • Your doctor will need to check your blood or urine at regular visits while you are using this medicine. Be sure to keep all appointments.
  • Your doctor may also need to check your eyes, skin, and bones for any problems or unwanted effects that may be caused by this medicine. Tell your doctor about all unusual side effects you may have while you are using this medicine. These may include eye pain, changes in vision, a red purplish skin rash, or pain in your bones or joints.
  • This medicine may make you dizzy or drowsy. Avoid driving, using machines, or doing anything else that could be dangerous if you are not alert.

Possible Side Effects While Using This Medicine

Call your doctor right away if you notice any of these side effects:

  • Allergic reaction: Itching or hives, swelling in your face or hands, swelling or tingling in your mouth or throat, chest tightness, trouble breathing
  • Blistering, peeling, red skin rash.
  • Bloody vomit or black, tarry stools.
  • Bone, joint, or leg pain.
  • Changes in vision or eye pain.
  • Dark-colored urine or pale stools.
  • Decrease in how much or how often you urinate.
  • Dry mouth, increased thirst, or muscle cramps.
  • Fever, chills, cough, sore throat, and body aches.
  • Headache or dizziness.
  • Nausea, vomiting, loss of appetite, or pain in your upper stomach.
  • Ringing, buzzing, or other unexplained noise in the ears.
  • Seizures or tremors.
  • Unusual bleeding, bruising, or weakness.
  • Yellowing of your skin or the whites of your eyes.

If you notice these less serious side effects, talk with your doctor:

  • Abnormal thoughts, bad dreams, confusion, depression, or nervousness.
  • Bad breath.
  • Drowsiness.
  • Mild nausea, vomiting, constipation, diarrhea, or stomach upset.
  • Mild skin rash or itching.
  • Trouble with hearing or walking.

If you notice other side effects that you think are caused by this medicine, tell your doctor

Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088

Version Info

  • Last Reviewed on 06/12/2013

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This page was last updated: June 18, 2013

         
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