Help prevent cystine stones with these tips and suggestions

People with cystinuria have one thing in common: they all have to find ways to manage the continual buildup of cystine in their bodies. How do they actively prevent cystine stones from forming? It takes a combination of commitment, creativity, and communication.

Tip 1

TIP 1

Make fluid intake part of your daily routine

One of the most important ways to reduce the risk of cystine stone formation is to drink enough fluid to dilute the concentration of cystine in your urine. As you may already know, the general guideline is to drink at least 3 L/day (ten 10-ounce glassfuls) to keep cystine levels below the solubility limit (generally <250 mg/L). This is no easy task, but there are ways to incorporate more fluids into your day.

  • Carry a refillable water bottle at all times; choose one that is both functional and appealing to you.
  • Try drinking your water and cold beverages through a straw.
  • Keep a small cooler in the car to hold water bottles for taking trips, running errands, and staying hydrated on hot summer days.
  • Set the alarm on your phone to remind you to pause and drink.

TIP 2

Choose foods that may help reduce your risk of forming cystine stones

Along with drinking more fluids, it is just as important for people with cystinuria to maintain a low-sodium and low-animal-protein diet. This will reduce the amount of cystine that the body excretes—or gets rid of—which reduces the risk of forming cystine stones.

Whenever possible, choose home-cooked meals and unprocessed foods such as fruits, vegetables, and certain non-animal-protein sources. Avoid processed foods, such as cold cuts and frozen meals, as well as restaurant meals. These foods tend to have a high salt content.

  • Be sure to read labels and look for "hidden" sodium. The recommended daily goal for people with cystinuria is 2300 mg or less.
  • Cut up fruits and vegetables and keep them visible in the refrigerator for snack times.
  • Check out nutrition stats before going out to eat; certain restaurants will post this information online.
  • Try replacing salt with seasonings such as herbs and spices.
Tip 2
Tip 3

TIP 3

Remember that pH is a key part of the plan

Cystine stones tend to form in highly acidic environments, so it is important to make your urine less acidic and more alkaline. That means having a urinary pH level between 6.5 and 7.0. To help achieve this, be sure to keep up with your fluid intake. Your doctor may also prescribe a medicine to help with urinary alkalinization.

  • Talk with your doctor to see if your pH level is in the right range.
  • Use pH testing strips to monitor your urinary pH levels at home. Find them at your local drugstore or order them online.
  • Eat fruits that are high in potassium, such as bananas. They can help make urine less acidic as they have an alkalizing effect in the body.

TIP 4

Speak up and your voice will be heard

One way to boost your knowledge about cystinuria is to partner with healthcare professionals and take an active role in decisions about your health. It's important to ask questions and understand why your doctor may need to adjust your treatment plan. To stay focused at your appointment, write down your questions before your next office visit and consider adding these to your list.

  • When is my next 24-hour urine cystine test and what is my cystine level?
  • What is my urinary pH level?
  • Am I drinking enough water?
  • What are the best options for monitoring the size of my cystine stones and checking for new ones?
Tip 4

Tap into other cystinuria resources

Cystinuria Resource: Rare Together

Join the Cystinuria Resource: Rare Together community on Facebook. This group is dedicated to individuals and families affected by cystinuria. This page offers information on cystinuria, as well as tips and advice on how to manage it, with the goal of preventing the next cystine stone.

International Cystinuria Foundation

Focused on supporting the cystinuria community by providing educational and health-related resources to affected individuals worldwide.

Check Orphan

Offers users an interactive platform whereby visitors have access to the latest news and information about rare, orphan, and neglected diseases.

National Kidney Foundation

Dedicated to making change through the awareness, prevention, and treatment of kidney disease for healthcare professionals, patients, and their families.

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