Treatment Options for an Improved Quality of Life
At this time,there are more than 30 different genes that can fail or is-fold that cause ALS to occur which is why we consider ALS to be a collection of many diseases. Some people with ALS can’t speak but can eat. Others can speak but eating is difficult. Some can use their hands and arms but can’t walk. And there is a huge combination of symptoms that can be experienced. Therefore, each person needs to be approached on an individual basis by focusing on his/her particular needs and issues.
Medications exist that can help reduce and minimize symptoms for those with ALS. In many instances, these medications have been used to treat symptoms for other diseases but have not been trialed for ALS. As a result, many neurologists and physicians are hesitant to write prescriptions because they are unfamiliar with the medications. Secondarily, if clinical trials have not been conducted specifically for those with ALS, there is a reluctance to endorse usage. Finally, none of these recommendations are systemic. In other words, they will not stop the disease. Rather, they are recommended because they can potentially provide symptom relief and an improved quality of life.
Our objective here is to alleviate concerns and provide information that can be shared with physicians and neurologists. Many of the recommendations require the services of a compounding pharmacy because they are generic formulations for a medication that has been taken off the market and is no longer available. Also, these medications have been successfully used for other conditions but have not been specifically clinically trialed for ALS. Finally, because each patient is unique, it’s difficult to determine in advance whether he or she will have a positive effect beforehand. So it’s important to try an initial dosage to see if the result is beneficial.
Patients are encouraged to download and print prescription information to bring to their neurologist when requesting a prescription. The cost for these medications range anywhere from $60 to $250 per month through most compounding pharmacies.
For those with ALS who would like to receive individual support, we ask that you complete an Online Profile. After submitting it, you will receive an email with a link to a calendar to schedule a Skype or FaceTime call with a counselor at ALS Worldwide. We look forward to hearing from you.
Methylcobalamin or Methyl B12 is an injectable medication given daily for greater energy and improved muscle strength. A prescription is required with these components: 25 mg/1mL (pH 2.7-3.0)
Glutathione is frequently effective for limb strength. It is given intravenously. Butterfly syringes are required. A prescription is required with these components: Compound Glutathione 200mg/ml.
Qunine Sulfate minimizes cramps and spasticity. One at night before bedtime should stop or significantly reduce muscle cramping. A prescription for 324 mg Capsules without fillers/preservatives is required.
Nuedexta may improve chewing and swallowing in addition to relieving pseudo bulbar affect - excessive laughter and/or crying. Even if these are not current issues, Nuedexta also frequently works as a preventive and may delay the onset of bulbar issues . Generic formula 25 mg Dextromothorphan / 10 mg Quinidine
Atropine Sulfate helps alleviate excess saliva. Atropine (Sal-Tropine) 0.4 mg tabs
Mexilitine provides relief from muscle cramping by taking 300 mg per day. This medication can be prescribed by your neurologist or physician and is frequently covered by insurance. 200 mg capsule (generic)
Edaravone - Radicava - Radicut
Known by all three names, Edaravone is a free radical scavenger believed to relieve the effects of oxidative stress. Recently approved by FDA in May 2017, it is available within the United States as Radicava, and available internationally through The Social Medwork.
PharmaNac, available through the company BioAdvantex, are effervescent, wild berry flavoried tablets that help thin and reduce phlegm, support a healthy immune system and help maintain good respiratory function. This product is available directly from BioAdvantex at 1-888-550-5350.
NeuRx Diaphragm Pacing System
The NeuRx Diaphragm Pacer, with its minimally invasive approach, is both scientifically and clinically proven to preserve diaphragm muscle strength and resultant vital capacity.
Higher caloric intake, healthy nutritional foods and effective supplements, such as those suggested here, can provide excellent support to help maintain and gain weight.
ALS Worldwide has found Hopewell Pharmacy to be an excellent resource for all of these medications for US citizens. While their contact information is provided here, there are other resources as well. Prescriptions provided by your physician can be ordered by emailing Hopewell Pharmacy Att: Melissa in the subject line. In the body of the email, include your name, mailing address, birthdate, email address, payment information either by providing credit card information or by responding to a paypal link for payment and a scanned copy of your physician's prescriptions. Melissa will email you the paypal link and then confirm your order is being processed.
Additional compounding pharmacies are located throughout the United States that may also be able to fulfill these prescriptions. Please check in your community to find a local resource.
Hopewell Pharmacy and Compounding Center for US Citizens
Contact: Melissa Pharmacist: JoAnn
Address: 1 West Broad Street, Hopewell, NJ 08525
Tel: 1-800-792-6670, ext. 3
Email Address: [email protected]
Citizens of countries other than the United States, but with access to a physician within the United States willing to provide a prescription for any of the medications listed above, can utilize the services of Hopewell Pharmacy.
OBI ROBOTIC FEEDING DEVICE
Obi™ is an assistive dining device that is designed to empower those afflicted with differing abilities, such as ALS, giving people back the dignity and independence of feeding themselves. Please visit https://meetobi.com to learn more about Obi and how you can buy, rent, or lease one.