ALS attacks nerve cells in the brain and spinal cord. The adverse results on patients’ abilities to move normally are well recognized, but there is less awareness of the ways that ALS affects critical activities that are not commonly associated with movement, such as eating. ALS Makes Swallowing Difficult As ALS advances and nerve cells are destroyed, muscles weaken. The consequence is that patients lose control of muscles throughout the body. In most patients, ALS affects the muscles that control chewing and swallowing, which makes eating, drinking, and taking medications difficult. When this occurs, ALS patients are often put on a feeding tube to improve their ability to get adequate nutrition and hydration. More than 1 Out of Every 4 ALS Patients Has a Feeding Tube In 2019, the ALS Association conducted a survey that showed that 26% of individuals with ALS had a feeding tube – formally referred to as a percutaneous endoscopic gastrostomy (PEG) tube. These tubes allow food, fluids, and medications to be delivered directly into the stomach. PEG tubes are placed outside of the abdomen and into the stomach of ALS patients. While tube sizes vary, the inside of these tubes tend to be about the same size as the inside of a straw. ALS Patients with Feeding Tubes Struggle to Take Pill-Form Medications Though feeding tubes help to overcome challenges related to eating and drinking, they are associated with complications related to pill-form medications. For example, the presence of crushed pills is a leading cause of clogged PEG tubes. When this clogging occurs, medical procedures – which may include surgery – tend to be needed to unclog or replace the tube. In addition to the risk for additional medical procedures, crushing pills can be problematic in patients with feeding tubes because patients may not get their intended medication dose. When tubes are clogged, for instance, pieces of crushed pills may not get through. A study published in 2018 showed that out of 24 pill crushing devices tested, 18 of the devices resulted in a significant drug loss. Thus, most pill crushing devices fail to adequately deliver full medication doses through feeding tubes. Another complicating factor with pill-form medications is that many of these medications are not intended to be crushed for a variety of reasons. The Institute of Safe Medicine Practices has a list of over 400 medications that should not be crushed. A list of these medications can be found here. Liquid Medications Can Help ALS Patients Overcome Medication Challenges Patients with PEG tubes who crush their medications are often advised to add about 1 ounce (30 mL) of warm water to help dissolve the pill. Unfortunately, medication potency can be affected by even slight changes in temperature such as those that can occur with warm water. Riluzole, a commonly prescribed ALS medication, is not meant to be exposed to temperatures above 86°F. Further exacerbating the issue of taking riluzole with a feeding tube is that this medication does not readily dissolve in water. Approximately 16 ounces of water is needed to dissolve one riluzole tablet. Though this medication has been available to ALS patients for 25 years, the medical literature does not provide evidence that riluzole can be safely crush and mixed with water or food. Luckily, riluzole is available as a liquid suspension medication and approved by the FDA to be swallowed or administered through a PEG tube or can be taken orally. Compared to other formulations, this liquid suspension medication offers a solution to help ALS patients get critical treatment more safely and conveniently. Doctors can help ALS patients identify the best medications and formulations for their unique situation. Takeaway PEG tubes play an essential role in helping people with ALS get proper nutrition, stay hydrated, and safely take their medication. Liquid medications should be used with PEG tubes whenever possible to prevent complications associated with pill crushing, such as changing medication potency and PEG tube clogging. A liquid suspension formulation of riluzole is one such available medication. Patients with PEG tubes should ask their doctor about liquid options for their medications.