1 What is Cystagon?

Brand: Cystagon, Procysbi

Generic: Cysteamine

Brand name:

Cystagon and Procysbi.

Cysteamine is indicated for patients with cystine crystal buildup in organs like the kidneys or cystinosis.

It works by reducing the amount of cysteine in the cells, which in turn promotes growth and preserves renal function.

You can only purchase this medication with a prescription. You can buy regular capsules or delayed-release capsules.

2 What to Know Before Using

Before you agree to use cysteamine, you have to talk to your physician about the pros and cons involved. There are a number of factors to consider before deciding to take this medication.

If you’ve had allergic reactions to similar medications, cysteamine might not be right for you. If you have allergies to other drugs, animals, food, dyes, and preservatives, you also need to inform your physician about those.

Studies have shown that the efficacy of cysteamine in children aged 2 years and older is not influenced or limited by any age-related factor.

However, there is little to no information regarding the influence of age on cysteamine’s effects in geriatric patients.

This medication has a pregnancy category of C, which means that there hasn’t been enough research conducted regarding cysteamine’s effects on the unborn fetus.

It should only be used if the benefits clearly outweigh the risks. It is not known whether cysteamine is passed in breast milk. Again, weigh the risks and benefits before using this medication when you are lactating.

Cysteamine may interact with other medications. It is, therefore, essential that you give a complete medication list to your physician. Do not take any OTC medication without consulting your doctor first. You need to avoid ethanol while you are on cysteamine treatment.

This medicine can also influence certain medical conditions including:

  • bone problems
  • blood problems
  • brain diseas
  • depression
  • head injury
  • increased intracranial pressure
  • liver disease
  • seizures
  • stomach or bowel ulcers

Make sure you inform your physician if you are currently suffering from or have a history of the aforementioned conditions.

3 Proper Usage

For optimum effects, you need to follow your doctor’s orders regarding the dosage, timing, and duration of treatment. It is important that you do not deviate from this.

Doing so may lead to the development of unwanted side effects. Read the patient information sheet so you are better informed about this cysteamine.

Delayed-release capsules need to be swallowed whole and not crushed, broken or chewed. You have to take it at the same time of the day with or without food.

For children younger than 2 years old, you can open the regular capsule and sprinkle the powder onto food or mixed formula. Take another dose of cysteamine if vomiting occurs within 20 minutes after taking the last one.

However, don’t take any more of it if you vomit again or if vomiting occurs more than 20 minutes after you took the medication. Do not take this medicine with high fatty meals. This may decrease the body’s ability to absorb it.

The dosage and scheduling depend on the condition to be treatment. The physicians will determine the initial dose of cysteamine for adult patients taking this medication to prevent cystine crystal buildup in the kidneys.

Adults patients taking delayed-release capsules and are not on cysteamine treatment will have their starting dose determined by their health care provider based on their body size.

The same goes for children. If you miss a dose of Procysbi, take it within 8 hours after your normal schedule. However, if the next timing is less than 4 hours away, skip it and resume your normal dosing schedule.

Keep this medication away from children’s reach. Delayed-release tablets need to be stored in their original packaging and in a dry place that’s away from direct light. Throw away expired medications.

4 Precautions to Take

Keep your follow-up visits. This is important because your doctor will need to monitor your progress. Your healthcare provider also needs to check for any untoward effects.

Consuming high doses of this medication can cause Ehler-Danlos like syndrome. Symptoms include broken bones, stretch marks, or joint problems.

Cysteamine can also cause skin reactions like peeling, blistering, red lesions, severe rashes, and skin sores or ulcers. Consult your doctor if you have the previously mentioned symptoms.

You should also check with your healthcare team if you experience severe stomach pain, nausea, vomiting coffee ground material and loss of appetite because these may be symptoms of stomach or bowel ulcers or bleeding.

Cysteamine can also affect your nervous system. Seek medical attention if you have depression, seizures, or severe drowsiness.

The same goes if you experience headaches, dizziness, hearing loss, tinnitus, nausea, blurred or double vision, pain behind the eyes or with eye movement, and loss of vision.

Do not drive or operate machines if you are dizzy. Check with your doctor if you experience any of those symptoms.

5 Potential Side Effects

There are also other side effects associated with cysteamine use. Some of them do not need treatment.

However, tell your doctor right away if you have:

Symptoms that can go away on their own include:

However, inform your physician if these do not resolve or if these get worse.