Has ALS caused you or a loved one to struggle with swallowing food and taking the full dose of your medications? Read about how ALS affects swallowing, which in turn can negatively impact nutrition and medication effectiveness.
Amyotrophic lateral sclerosis (ALS) damages the nerves that control the movement of muscles, including the muscles involved in swallowing. Many people with ALS don’t notice they have difficulty swallowing because their bodies automatically adjust to the small day-to-day changes that occur in their ability to swallow. However, their family and caregivers often notice that they experience difficulty swallowing. The medical term used to describe swallowing difficulties is dysphagia, which means difficulty in eating and is the sensation of having difficulty or an abnormality in swallowing.
How Common is Dysphagia in People with ALS?
Dysphagia is very common in ALS and affects up to 85% of people. Each person is unique and may have different symptoms. Common symptoms include coughing or choking on food or liquid while swallowing, pain while swallowing, the sensation of food getting stuck in throat or chest. Initially, swallowing difficulties may be subtle and managed by choosing foods that are easier to swallow. It is important that patients let their doctors know as soon as they experience any changes in their swallowing.
Having difficulty swallowing your medication? Click here to get information on how your doctor can prescribe a suspension form of riluzole today.
What Are the Risks of Dysphagia?
Dysphagia contributes to malnutrition, dehydration, and aspiration pneumonia. Together, these account for 1 out of 4 deaths in ALS. The risk of aspiration pneumonia is one of the main reasons patients should tell their doctor if they have difficulty swallowing. Too often, doctors don’t learn their patients had difficulty swallowing until being admitted to the hospital with aspiration pneumonia. Doctors need to intervene as early as possible if a patient has difficulty swallowing – before a patient has their first episode of aspiration.
What is a Feeding Tube?
For patients who are at risk of choking or aspirating food or fluid into their lungs, their doctor may recommend they get a feeding tube. The most common type of feeding tube for people with ALS is a percutaneous endoscopic gastrostomy tube, also known as a PEG tube. Approximately 1 out of 4 people with ALS have a PEG tube. The placement of a PEG tube is a surgical procedure often done with an intravenous sedative and local anesthesia. During the procedure, a flexible tube is placed through the abdominal wall and into the stomach. PEG tubes allow nutrition, fluids, and medications to be given directly into the stomach.
How is Medication Taken with a Feeding Tube?
For people who have feeding tubes, it is recommended that patients avoid crushing tablets and use liquid mediations whenever possible. Crushed tablets are the most common cause of PEG tubes getting clogged and occurs in 1 out of 3 patients. Clogged feeding tubes can cause dehydration, malnutrition, and the need for additional surgery or be replaced.
- ALS damages the nerves that control the movement of muscles, including the nerves and muscles that control swallowing
- Dysphagia is common and affects approximately 85% of people with ALS
- It is important that patients inform their doctor if they develop changes in their ability to swallow
- Feeding tubes play a critical role to ensure that patients get proper nutrition, stay hydrated, and take their medications
- It is recommended that patients with feeding tubes avoid crushing tablets and use liquid medications whenever possible
Taking the Full Dose of Riluzole for the Drug’s Full Benefit
As with any medication, it is imperative that patients are able to take the full, prescribed dose of riluzole in order to get the full benefit of the drug. At some point, many people living with ALS experience swallowing problems, also known as dysphagia (pronounced “dis-FAY-ja”). As swallowing problems develop in ALS patients, doctors typically recommend crushing riluzole tablets and mixing them with foods, such as yogurt or applesauce.
While this has been the longstanding approach to administering the medicine for those with swallowing difficulties, choosing to crush riluzole tablets may prevent ALS patients from getting the full effect of the medicine, since the full portion of the dose might not fully ingested. A suspension form of riluzole is available to meet the needs of people with ALS who have difficulty swallowing or have a feeding tube. When ALS patients take the full dose of riluzole every day, they have the best chance of maximizing the drug’s full benefit.
Click here to get information on how your doctor can prescribe a suspension form of riluzole today.
Epps, D. et al. (2020). Evaluation and management of dysphagia in amyotrophic lateral sclerosis: A survey of speech-language pathologists’ clinical practice. Journal of Clinical Neuromuscular Disease, 21(3), 135-143.
Jani, M.P. & Gore, G.B. (2016). Swallowing characteristics in amyotrophic lateral sclerosis. NeuroRehabilitation, 39(2), 273-276.
Onesti, E. et al. (2017). Dysphagia in amyotrophic lateral sclerosis: Impact on patient behavior, diet adaptation, and Riluzole management. Frontiers in Neurology, 8, 94.
Tesiman, I.K. et al. (2011). Cortical processing of swallowing in ALS patients with progressive dysphagia – A magnetoencephalographic study. PLoS One, 6(5), e19987.
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