Symptom Relief Medications
For the past 17 years, ALS Worldwide has searched for medications that reduce and minimize symptoms for those with ALS. While these medications have been identified and used successfully to treat symptoms, the challenge for many patients is having access to the medications. Many neurologists and physicians are hesitant to write prescriptions because they lack familiarity with the recommendations. 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.
Therefore, patients are encouraged to print complete prescription information to bring to their neurologist when requesting a prescription. Costs vary from $50 to $250 per month depending upon the specific medication.
1. 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)
2. Glutathione is also effective for limb strength. It is given via intravenous. A prescription is required with these components: Compound Glutathione 200mg/ml.
3. Qunine Sulfate minimizes cramps and spasticity. One at night before bedtime should stop the cramping. 324 mg Capsules without fillers.
4. Nuedexta helps with eating chewing and swallowing as well as pseudo bulbar affect - the excessive laughter and crying. Even if these are not current issues, Nuedexta does work as a preventive and is available through Hopewell Pharmacy. 25 mg / Quinidine 10 mg
5. Atropine Sulfate helps with excess saliva and is available through Hopewell Pharmacy. 25 mg / Quinidine 10 mg
6. Mexilitine provides relief from muscle cramping by taking 300 mg per day. This medication can be prescribed by your neurologist or physician and then covered by your insurance provider. 200 mg capsule (generic)
ALS Worldwide has found Hopewell Pharmacy to be an excellent resource for all of these medications. And while their contact information is provided here, other resources can be utilized successfully.
Hopewell Pharmacy and Compounding Center
1 West Broad Street
Hopewell, NJ 08525
Tel: 1-800-792-6670, ext. 3