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What is this medicine?

CYSTEAMINE (sis TEE a meen) breaks down cystine in the body. It is used to treat nephropathic cystinosis in children and adults. This medicine is not a cure.

What should I tell my health care provider before I take this medicine?

They need to know if you have any of these conditions:

-bone problems
-depression or other nervous system problems
-history of blood disease
-history of stomach bleeding
-liver disease
-skin conditions or sensitivity
-stomach or intestine problems
-an unusual or allergic reaction to cysteamine, penicillamine, other medicines, foods, dyes or preservatives
-pregnant or trying to get pregnant

How should I use this medicine?

Take this medicine by mouth with a glass of water. Follow the directions on the prescription label. Do not cut, crush or chew this medicine. Take this medicine on an empty stomach, at least 30 minutes before or 2 hours after food. If it upsets your stomach, you may take it within 1 hour before eating or after eating 4 ounces (1/2 cup) of a low fat food. If you have a hard time swallowing, the capsules may also be opened and sprinkled on 4 ounces (1/2 cup) of applesauce, berry jelly, orange juice, or apple juice. Eat or drink the mixture within 30 minutes of preparation, do not store for later use. You should always take your medicine the same way each time. Take your medicine at regular intervals. Do not take it more often than directed.

Talk to your pediatrician regarding the use of this medicine in children. While this drug may be prescribed for children as young as 6 years for selected conditions, precautions do apply.

Overdosage: If you think you've taken too much of this medicine contact a poison control center or emergency room at once.

What if I miss a dose?

If you miss a dose, take it as soon as you can. If your next dose is less than 4 hours away, then skip the missed dose and only take your next regularly scheduled dose. Do not take double or extra doses.

What may interact with this medicine?

-sodium bicarbonate

What should I watch for while using this medicine?

Visit your doctor for regular check ups. You will need regular blood tests while you are taking this medicine.

You may get drowsy or dizzy. Do not drive, use machinery, or do anything that needs mental alertness until you know how this medicine affects you. Do not stand or sit up quickly, especially if you are an older patient. This reduces the risk of dizzy or fainting spells.

What side effects may I notice from receiving this medicine?

Side effects that you should report to your doctor or health care professional as soon as possible:

-allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue
-bone pain or fractures
-breathing problems
-changes in vision
-confusion, depression, other mood changes
-dark urine
-eye pain
-feeling faint or lightheaded, falls
-fever or chills, sore throat
-general ill feeling or flu-like symptoms
-nausea, vomiting
-purple skin lesions
-ringing in the ears
-trouble passing urine or change in the amount of urine
-unusually bleeding or bruising
-unusually weak or tired
-yellowing of eyes or skin
Side effects that usually do not require medical attention (Report these to your doctor or health care professional if they continue or are bothersome.):

-constipation or diarrhea
-loss of appetite
-stomach upset
-unpleasant breath

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All visitors to AARP.org should seek expert medical care and consult their own physicians for any specific health issues. Read this disclaimer in its entirety.
Note: This information is not intended to cover all possible uses, precautions, interactions, or adverse effects for this drug. If you have question about the drug(s) you are taking, check with your health care professional.
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