To get started, know your cystine levels

To determine your THIOLA dosage your doctor may perform a 24-hour urine test. The dosage should be based on the amount of THIOLA required to bring your cystine levels below the line of solubility (generally <250 mg/L).  

The recommended starting dosage is different for children and adults.

Recommended starting dosage

For adults:

may begin at 800 mg/day

For children
≥9 years of age:

may begin at 15 mg/kg/day

Your doctor may start you on this recommended dosage, but will adjust as needed based on the amount of THIOLA necessary to reduce your cystine levels.

Average dosage of THIOLA

Did you know?

In a clinical trial, the average dosage of THIOLA per person was approximately 1000 mg/day. Talk to your doctor to make sure your starting dosage is right for you.

How to take THIOLA

Your total THIOLA dose should be divided into smaller doses and taken 3 times per day at least 1 hour before or 2 hours after meals.

The example below shows how a total THIOLA dose might be divided.

If your total dose = 900 mg/day
Morning

300 mg

Morning (at waking)

Afternoon

300 mg

Afternoon

Night

300 mg

Night (before bed)

Always take THIOLA at least 1 hour before or 2 hours after meals, as food can affect how THIOLA is absorbed in your body, potentially lessening the effect of THIOLA.

What to expect once you start THIOLA

For best results, it is important to remember that you should continue making therapeutic lifestyle changes—including drinking more water, reducing your protein and sodium intake, and taking medications to adjust the pH of your urine—while taking THIOLA. Once you start treatment, your doctor will schedule regular visits and ask you to perform 24-hour urine collections to monitor your cystine levels.

Clock

After being on THIOLA for 1 month, your doctor will ask you to perform a 24-hour urine test to evaluate your cystine levels and determine necessary dosing adjustments.

Month

Your doctor should ask you to perform a 24-hour urine test every 3 months thereafter to continue monitoring your cystine levels.

As your cystine levels change, your doctor may adjust your THIOLA dose to meet your treatment goal of reducing cystine below the line of solubility (generally <250 mg/L).

Do you know your cystine levels?

Keep up with your treatment plan and regularly monitor your cystine levels to become—and stay—stone-free. 

Lindsay’s journey to stone-freea

Lindsay, age 23, was able to move from a cystinuria diagnosis to stone-free in less than 1 year by working closely with her doctor and following her management plan, which included being diligent about drinking more fluids, regularly monitoring her urinary cystine level, and finding the right dosage of THIOLA.

Are you ready to become stone-free? Watch Lindsay’s story to learn how she did.

aIndividual patient response. Not all patients will respond similarly to the same medical treatment.

For more information on Lindsay’s journey, as well as cystinuria management tips and insights, download this guide. If you have questions about your own journey to stone-free, bring this guide to your next doctor’s appointment to get the conversation started.

THIOLA® (tiopronin)

Important Safety Information

What is THIOLA® (tiopronin) tablets?

THIOLA tablets is a prescription medicine.  It is used in combination with high fluid intake, alkali (low acid), and dietary changes to help prevent the formation of one type (cystine) of kidney stones in certain adult and pediatric patients that weigh at least 44 pounds (20 kg) and who do not respond to these measures alone. 

Who should not take THIOLA?

THIOLA should not be taken if you:

  • Are allergic to THIOLA, or any of the ingredients in THIOLA.

What should I tell my doctor before taking THIOLA?

THIOLA may not be right for you.  Before taking THIOLA, tell your doctor about:

  • all health conditions you may have and any medications you may be taking
  • if you are pregnant or plan to become pregnant
  • if you are breastfeeding or plan to breastfeed

What are possible side effects of THIOLA?

Serious Side Effects: THIOLA can cause proteinuria (high amounts of protein in urine), including serious kidney problems, and hypersensitivity reactions (including fever, rash, joint pain and enlarged or swollen lymph nodes).

Most Common Side Effects: Nausea, diarrhea or soft stools, sores in the mouth, rash, fatigue, fever, muscle or joint pain, high amounts of protein in urine, vomiting.

These are not all the possible side effects of THIOLA. Call your doctor for medical advice about side effects.

You may report negative side effects to Retrophin® Medical Information at 1-877-659-5518, or to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch

Please see full THIOLA Prescribing Information

 

THIOLA® EC (tiopronin)

Important Safety Information

What is THIOLA® EC (tiopronin) delayed-release tablets?

THIOLA EC delayed-release tablets is a prescription medicine.  It is used in combination with high fluid intake, alkali (low acid), and dietary changes to help prevent the formation of one type (cystine) of kidney stones in certain adult and pediatric patients that weigh at least 44 pounds (20 kg) and who do not respond to these measures alone. 

Who should not take THIOLA EC?

THIOLA EC should not be taken if you:

  • Are allergic to THIOLA EC, or any of the ingredients in THIOLA EC.

What should I tell my doctor before taking THIOLA EC?

THIOLA EC may not be right for you.  Before taking THIOLA EC, tell your doctor about:

  • all health conditions you may have and any medications you may be taking
  • if you are pregnant or plan to become pregnant
  • if you are breastfeeding or plan to breastfeed

What should I avoid while taking THIOLA EC?

You should avoid drinking alcohol 2 hours before and 3 hours after taking THIOLA EC.

What are possible side effects of THIOLA EC?

Serious Side Effects: THIOLA EC can cause proteinuria (high amounts of protein in urine), including serious kidney problems, and hypersensitivity reactions (including fever, rash, joint pain and enlarged or swollen lymph nodes).

Most Common Side Effects: Nausea, diarrhea or soft stools, sores in the mouth, rash, fatigue, fever, muscle or joint pain, high amounts of protein in urine, vomiting.

These are not all the possible side effects of THIOLA EC. Call your doctor for medical advice about side effects.

You may report negative side effects to Retrophin® Medical Information at 1-877-659-5518, or to the FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.  

Please see full THIOLA EC Prescribing Information