Amyotrophic lateral sclerosis 1

Treatment

What are the first steps after an initial diagnosis of Amyotrophic Lateral Sclerosis?

There is currently no cure for amyotrophic lateral sclerosis (ALS) and treatment is targeted at relieving symptoms of the disease. Individuals with ALS will typically have a multi-disciplinary care team including a neurologist, pulmonologist, psychologist, social worker and nursing team. Speech, occupational, and physical therapy are also typical for palliative care. Individuals with familial ALS may also have a genetics team caring for them and their family. There is a medication called riluzole (Rilutek), which is FDA-approved for the treatment of ALS. Riluzole has the best results when started early in the course of the disease and appears to slow the progression of ALS. Riluzole cannot reverse existing motor neuron damage.

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Is there a treatment for Amyotrophic Lateral Sclerosis?

Are there side effects to Riluzole?

How long do I have to be treated for Amyotrophic Lateral Sclerosis?

Are there other symptom specific treatments for Amyotrophic Lateral Sclerosis?

How does someone with Amyotrophic Lateral Sclerosis prevent malnutrition?

How does someone with Amyotrophic Lateral Sclerosis prevent breathing complications?

Is there a treatment for Amyotrophic Lateral Sclerosis?

No cure has been found for amyotrophic lateral sclerosis (ALS). The Food and Drug Administration (FDA) approved the drug riluzole (Rilutek) in 1995. Riluzole is believed to protect the motor neurons against damage and slow the progression of disease. It is suspected that this medication works by decreasing the levels of a chemical called glutamate in the brain. Clinical trials have shown that this drug can extend the life of someone with ALS by several months. It can also extend the time before ventilation support is needed for breathing.

New medications are emerging to help treat ALS. For information about clinical trials that may include drug therapy, visit clinicaltrials.gov.

Are there side effects to Riluzole?

There are drugs that interact with riluzole and some people may not be able to take the medication due to other health or medical issues. Individuals who are considering this medication should consult with their physician. Commonly reported side effects of riluzole include weakness and nausea. More serious side effects have been reported and include:

More common:

Blurred vision

difficulty with breathing

difficulty with moving

dizziness

excessive muscle tone

headache

increased cough

muscle pain or stiffness

muscle tension or tightness

nervousness

pain in the joints

pounding in the ears

slow or fast heartbeat

Less common:

Bladder pain

bloating or swelling of the face, arms, hands, lower legs, or feet

bloody or cloudy urine

bluish lips or skin

burning while urinating

changes in skin color

chest congestion

chest pain

chills

cold sweats

confusion

dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position

cough

cough producing mucus

diarrhea

difficult, burning, or painful urination

difficult or labored breathing

difficulty with swallowing

fast, pounding, or irregular heartbeat or pulse

fever

frequent urge to urinate

general feeling of discomfort or illness

headache

increased sputum

loss of appetite

low blood pressure or pulse

lower back or side pain

muscle aches and pains

nausea

pain

rapid weight gain

runny nose

shivering

shortness of breath

slow breathing

sneezing

sore throat

sweating

tenderness

tightness in the chest

tingling of the hands or feet

trouble sleeping

troubled breathing

unconsciousness

unusual tiredness or weakness

unusual weight gain or loss

vomiting

wheezing

Rare:

Continuing sores in the mouth

convulsions

increased thirst

lack of coordination

lack of energy

mental depression

mood or mental changes

muscle cramps, pain, or weakness

pain, tenderness, bluish color, or swelling of the foot or leg

redness, scaling, or peeling of the skin

swelling of the eyelids, mouth, lips, tongue, or throat

swelling of the face

yellow eyes or skin

How long do I have to be treated for Amyotrophic Lateral Sclerosis?

Treatment for amyotrophic lateral sclerosis (ALS) should be continued throughout the patient’s lifetime. Riluzole may extend the life of patients with ALS and delay progression of symptoms. Other treatment such as physical therapy, speech therapy, and occupational therapy can help improve quality of life.

Are there other symptom specific treatments for Amyotrophic Lateral Sclerosis?

Physical therapy, speech therapy, and occupational therapy can help improve quality of life of individuals with amyotrophic lateral sclerosis (ALS). Gentle, low impact exercise such as walking, swimming, and stationary cycling can strengthen unaffected muscles and improve cardiovascular health. Nutritional support is also important for patients with ALS. Some patients can develop pain, depression, sleep disturbances, and constipation. Additional medication may be needed to treat these additional symptoms as they are seen.

How does someone with Amyotrophic Lateral Sclerosis prevent malnutrition?

Working with a nutritionist is important for people with amyotrophic lateral sclerosis (ALS). Speech therapists and nutritionists can help plan many small meals throughout the day that provide enough proper nourishment. It is important to avoid foods that are difficult to swallow. Suction devices can help remove excess fluids/saliva to prevent choking. Eventually a doctor may consider inserting a feeding tube into the stomach.

How does someone with Amyotrophic Lateral Sclerosis prevent breathing complications?

Nutritional support services and pulmonologists will work together to prevent swallowing and breathing complications.

Sleep assistance: The muscles that help with breathing will eventually begin to weaken in patients with amyotrophic lateral sclerosis (ALS). Machines can be used at night to help with breathing. Intermittent positive pressure ventilation (IPPV) or bi-level positive airway pressure (BIPAP) can be used to help breathe during sleep. These devices help inflate someone’s lungs by force.

Daytime assistance: The above mentioned devices can begin to be used full time. The NeuRx Diaphragm Pacing System is another option for some people with ALS, in which electrodes are implanted to cause the diaphragm (breathing muscle) to contract.

Full-time support: Mechanical ventilators (respirators) are machines that inflate and deflate a person’s lungs for them so they can breathe. A tube must go into the windpipe through the nose, mouth, or trachea (tracheostomy). This does not slow down the progression of ALS, but does allow patients to live longer.

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