What treatments are available?

In August 2018, The FDA has approved Radicava™ (Edaravone), the first new treatment specifically for ALS since Riluzole in 22 years. Although Radicava is not a cure, it may be an important advance in helping people live with the disease. Depending on a person’s level of function when they begin treatment, the impact Radicava demonstrated in clinical trials could translate into potentially helping people preserve function longer. Read more about Radicava.

Riluzole, manufactured under the brand name Rilutek, the first treatment to alter the course of ALS, was approved by the FDA in late 1995. This antiglutamate drug was shown scientifically to prolong the life of persons with ALS by at least a few months. More recent studies suggest Riluzole slows the progress of ALS, allowing the patient more time in the higher functioning states when their function is less affected by ALS. Click here to read more about Rilutek.

Symptom Management
People with ALS may be coping with a variety of symptoms. While there are general commonalities, including weakness, loss of muscle strength, trouble with speech, swallowing, or breathing, not every patient gets every symptom. And no two patients will have symptoms in the same way: for instance, one patient may have trouble with speech but have limited limb weakness, while another patient may have no trouble with speech but notice hand weakness. Time of progression will also vary from person to person: statistics are only broad averages. Though two people may present with the same general symptoms over a similar length of time, their experience with the symptoms going forward may be totally different through the course of the disease. For this reason, individually-tailored treatment to manage symptoms is essential for your best well-being.

Clinical Trials
If considering participating in research or a drug trial, you can find information about current research studies worldwide at the following websites:

www.alsa.org (National ALS Association): Click on the “Our Research” link in the black bar across the top of the page and select “Clinical Trials” along the left sidebar.

http://clinicaltrials.gov (U.S. National Institutes of Health): Registry of federally and privately supported clinical trials conducted in the United States and around the world. Gives information about a trial's purpose, who may participate, locations, and phone numbers for more details for information about ALS-specific trials.

http://www.alsconsortium.org/browse.php With help from the ALS Association, NEALS provides up-to-date information for finding both federally and privately funded clinical studies  focusing on ALS and motor neuron diseases. You can locate both interventional trials, which examine if treatments are effective and safe under controlled environments, and observation trials, which examine people in more natural environments.

Make note of trials you are interested in to discuss with your ALS physician.

Complementary and Alternative Medicine

What is Complementary & Alternative Medicine?
Complementary and Alternative Medicine (CAM) refers to therapies that extend outside of the normal practices of conventional medicine used by either a medical doctor (MD) or a doctor of osteopathy (DO). Complementary medicine is used in conjunction with conventional medicine whereas alternative medicine is used in place of conventional medicine. Integrative medicine combines the use of CAM practices that have shown significant effectiveness and safety with traditional medicine.

While some scientific evidence exists regarding some CAM therapies, for most there are key questions that are yet to be answered through well-designed scientific studies.  These are questions such as whether the therapies are safe and whether they work for the diseases or medical conditions for which they are used. If you are considering CAM, it is critical to discuss with your medical doctor to determine safety and for assistance using appropriately in combination with other therapies.

When considering CAM, what questions should patients ask their CAM health care providers?

  • What benefits can I expect from this therapy?
  • What are the risks associated with this therapy?
  • How will this therapy interact with my conventional treatment(s)?
  • What are the potential side effects?
  • Is this therapy part of a clinical trial? If so, who is sponsoring the trial?
  • Will the therapy be covered by health insurance?

It is important to tell all your health care providers about any complementary and alternative practices you use or are considering.  Give them a full picture of what you do to manage your health. This will help ensure coordinated and safe care. You can find additional information about CAM, including reports of research on specific therapies, from the National Center for Complementary and Alternative Medicine, a division of the NIH (National Institutes of Health) on their website, http://nccam.nih.gov/ or from the Mayo Clinic website, http://www.mayoclinic.org/healthy-living/consumer-health/basics/alternative-medicine/hlv-20049491.

The information and services provided by the ALS Association Greater Philadelphia Chapter are for informational purposes only. The information and services are not intended to be substitutes for professional medical advice, diagnosis or treatment. If you are ill, or suspect that you are ill, see a doctor. The ALS Association Greater Philadelphia Chapter does not recommend nor endorse any specific physicians, products or treatments even though they may be mentioned on this site.

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