Oct. 12, 2009 -- New treatment guidelines for people with ALS, also known as Lou Gehrig's disease, can help people with the disease live better and longer than previously possible.
Researchers say more treatments are now available to ease the burden of ALS (amyotrophic lateral sclerosis) and revised guidelines were needed to best utilize the most effective therapies.
"Important treatments available for people with ALS are often not suggested by doctors and not used by patients," says researcher Robert G. Miller, MD, of the California Pacific Medical Center in San Francisco, in a news release. "While we are waiting for a cure, people need to know that a lot can be done to make life easier and longer for people with ALS."
ALS is a rapidly progressive neurological disease that attacks the nerve cells that control voluntary muscles, eventually making it difficult to stand, walk, breathe, and swallow. Most people with the disease die within two to five years after diagnosis, but 10% may live 10 years or more after diagnosis.
The guidelines, published in Neurology, revise the previous guidelines, which were published in 1999. Researchers say since then many new therapies have emerged to manage the symptoms of ALS.
In creating the guidelines, they reviewed over 40 studies on ALS treatment published between 1998 and 2007.
The guidelines recommend offering riluzole to people with ALS to slow the rate at which the disease progresses. Currently, riluzole is the only FDA-approved drug to treat ALS; it has been shown to have a modest effect on prolonging survival.
Other recommended tools to prolong survival and improve quality of life include:
- An assisted breathing device when breathing becomes difficult.
- A feeding tube known as a PEG tube to maintain proper nutrition.
- Botulinum toxin B to treat drooling if other medications don't help.
- Screening and treatment for behavioral or thinking problems.
Finally, researchers say attending a multidisciplinary clinic for ALS treatment may also improve access to treatments and improve survival for people with ALS.