PEG Tubes Can Play a Vital Role in ALS

Many people with ALS develop difficulty swallowing and are at risk of not getting adequate nutrition, becoming dehydrated, and not regularly taking their medications. Additionally, challenges with swallowing can lead to choking or foreign particles going into the lungs called aspiration. Aspiration can lead to a dangerous infection called aspiration pneumonia. If a patient or their caregiver believes aspiration occurred, they should contact their doctor as soon as possible.

Symptoms of Aspiration

  • Choking or coughing while swallowing
  • Blue discoloration of the skin
  • Being hoarse
  • Fast heart rate
  • Coughing while swallowing
  • Difficulty speaking
  • Shortness of breath
  • Rapid breathing

Approximately 1 out of 4 people with ALS have a Percutaneous Endoscopic Gastrostomy or PEG tube.  A PEG tube is a permanent opening outside the person’s body into their stomach. They are about the diameter of a pencil or smaller and allows patients to receive adequate nutrition, fluids, and medication without swallowing. PEG tubes play a vital role in decreasing the risk of aspirating on food, beverages, and medications.

Patients should discuss with their physician the placement of PEG tubes soon after being diagnosed.  Ideally, PEG tube placement should occur before swallowing symptoms begin to reduce nutritional deficiencies and the risk of aspiration. One of the reasons is that the progression of breathing muscle weakness usually occurs at the same time swallowing weakness does. When the ability to breathe is strong, the placement of these tubes is safer.

A PEG tube is an alternative way of eating and drinking, but this does not affect eating by mouth. PEG tubes supplement oral intake when swallowing weakness begins. The PEG tube becomes the sole method of nutrition, hydration, and taking medications if swallowing foods and fluids become too difficult or too dangerous.

Diagram - PEG (feeding) Tube
Diagram showing PEG tube

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Indication

TIGLUTIK (riluzole) is a prescription medicine for the treatment of amyotrophic lateral sclerosis (ALS).

Important Safety Information

  • You should not take TIGLUTIK if you are allergic to any of its ingredients.
  • TIGLUTIK can cause liver injury, including death. Your doctor should do blood tests to check your liver function before and during your treatment and may stop treatment with TIGLUTIK if liver function is not normal. Contact your doctor immediately if you have unexplained nausea, vomiting, abdominal pain, fatigue, anorexia, or jaundice and/or dark urine.
  • Call your doctor immediately if you have a fever, cough, or difficulty in breathing while taking TIGLUTIK.
  • If you miss or skip a dose of TIGLUTIK, do not take any extra dose to make up for those you missed, but take your prescribed dose at the next regularly scheduled time.
  • The most common side effects of TIGLUTIK that occurred during medical studies were numbness/tingling around the mouth, weakness, nausea, decreased lung function, high blood pressure, and abdominal pain. If any side effects become troublesome, contact your doctor.
  • Be sure to tell your doctor and pharmacist about all other health conditions you have and all medicines you are taking, including nonprescription products and vitamins. If you have questions, please talk to your doctor.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-332-1088.

Please click here for the Full Prescribing Information.

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