best cbd oil for als patients

Frequently Asked Questions

Belafsky PC, Mouadeb DA, Rees CJ, Pryor JC, Postma GN, Allen J, and Leonard RJ. Validity and reliability of the Eating Assessment Tool (EAT-10). Ann Otol Rhinol Laryngol 117: 919-924, 2008.
http://www.ncbi.nlm.nih.gov/pubmed/26510823http://www.ncbi.nlm.nih.gov/pubmed/26510823. 2016 Jan;28(1):85-90. doi: 10.1111/nmo.12700. Epub 2015 Oct 28.

Is it a good idea to take drugs that are available for other conditions like epilepsy but are still in testing for ALS? Is there anything to lose? We and others in ALS research have been frustrated to see many drugs undergo testing and fail even in the larger phase III trials after benefit seemed to be present in the earlier stage trials. In addition, some of the drugs, like topirimate, made patients worse, so there is a risk. Last, providing the drugs outside of clinical trials reduces the number of patients willing to be in the trials and impedes the progress of the trials. We encourage patients to seek trials whenever possible www.clinicaltrials.gov. Below is a partial list of tested drugs that had no proven benefit in ALS:

  1. Acetylcysteine
  2. Amantidine/guanidine
  3. Arimoclomol
  4. Beta interferon
  5. BCAA
  6. BDNF
  7. ceftriaxone
  8. Celecoxib
  9. Celecoxib/minocycline
  10. CNTF
  11. CoQ10
  12. Creatine-3
  13. Cyclosporin
  14. Dexpramipexole
  15. Dextromethorphan
  16. Erythropoietin
  17. Gabapentin
  18. Gangliosides
  19. Glatirimer
  20. Guanidine
  21. IGF-1- 5 trials
  22. Indinavir
  23. Inosiplex
  24. Lamotrigine
  25. Levamisole
  26. Lithium
  27. L-threonine
  28. Memantine
  29. Methionine/antiox
  30. Methylcobalamin
  31. Mexiletine
  32. Minocycline
  33. Nimodipine
  34. NP001
  35. Pentoxyfylline
  36. Physostigmine
  37. Pioglitazone
  38. Rasagiline
  39. Selegiline
  40. Talampanel
  41. TCH346
  42. Thalidomide
  43. Thyrotropin-6
  44. Tilorone
  45. Topirimate
  46. Ursodeoxycholic acid
  47. Valproic Acid
  48. Vitamin E
  49. Xaliproden
  • Should my family members be tested for ALS? If there is no family history of ALS, and you do not have a known genetic cause, we do not recommend screening of family members for any of the more than 30 abnormal genes that can cause ALS. It would be optional to speak to a genetic counselor. If there is a history of another family member having ALS, we would suggest that you consider undergoing screening for a genetic cause of ALS. Your neurologist, genetic counselor, or both would discuss the options for testing, and you may want to look into whether such testing is covered by your insurance. If you have a known mutation that is associated with ALS, genetic testing of asymptomatic family members at risk could be considered, but this decision must be made carefully since there is no current treatment that would prevent symptoms from occurring, and some patients with a mutation may not become symptomatic. Knowing that there is a mutation could cause significant stress, but it could also help with future planning. This screening should be performed in conjunction with genetic counseling obtained via referral from your family member’s primary care physician. The following recommendations for genetic counseling of presymptomatic patients or family members at risk was published by Benatar et al. Neurology 2016;86:2295-2302. (Their screening was done on a research basis.)
  1. The decision to undergo presymptomatic genetic testing should be voluntary with informed consent obtained and documented, and it should only be performed in patients 18 years of age or older. The rationale for pursuing the testing should be explored fully.
  2. Individuals who undergo screening should be evaluated for psychosocial readiness to be certain that they can handle the results of the testing.
  3. The genetic counseling should be performed by specialists. Multiple counseling sessions may be required. Testing should be performed in a certified laboratory. Individuals should be informed as to whether or not the results will become part of their official medical record and what that could mean long term. There are many other recommendations that could be found in the paper mentioned above and individuals must be aware of the potential legal and other implications of genetic testing including the inability to obtain life, disability, and long term care insurance.
  • Are cannabinoids, “medical marijuana”, and related compounds of benefit in ALS?
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There is evidence in animal models that cannabinoids may be beneficial as neuroprotective agents in ALS. There is some evidence of slowing or delaying disease in ALS mice. There are no good studies of these compounds in humans. Per a review by Sabrina Giacoppo and Emanuela Mazzon in Neural Regen Res. 2016 Dec; 11(12): 1896–1899.doi: 10.4103/1673-5374.197125 entitled ”Can cannabinoids be a potential therapeutic tool in amyotrophic lateral sclerosis?”, they report that:

“According to a single observational study of patients with ALS, only the 10% who admitted consuming Cannabis revealed moderate relief of several symptoms, including appetite loss, depression, pain, and drooling (Carter and Rosen, 2001; Amtmann et al., 2004).

In addition, spasticity is also a major problem for ALS patients, and one of these studies noted that Cannabis can subjectively improve spasticity (Amtmann et al., 2004). Moreover, a randomized, double-blind crossover study investigating the safety and tolerability ofΔ9-THC in ALS patients revealed that oralΔ9-THC administration was well tolerated, but a non-significant attenuation of cramp frequency and intensity were found. Other studies confirmed the same results, demonstrating that Cannabis is remarkably safe with realistically no possibility of overdose.

There are no clinical studies so far that have tried to prove the potential of cannabinoids as disease-modifying therapies as widely supported by experimental studies, so this hypothesis remains a major challenge for future research.”

Using Medical Marijuana to Treat ALS Symptoms

When it comes to treating symptoms associated with ALS, people will try a variety of methods to see what will work best for them. Among those options is medical marijuana, or cannabis. Although this can be a controversial treatment method depending on where you live and your outlook on the drug, some people with ALS believe the benefits provided by cannabis makes it easier to live with ALS. Here’s what you should know about cannabis and ALS treatment.*

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Why People Use it

Because cannabis is known to suppress inflammatory response and act a numbing agent, it makes sense that it would be considered and used to relieve pain. Its use has been associated with other life-limiting diseases and chronic conditions, including cancer and multiple sclerosis, in a similar way. In a survey conducted on 500 people with ALS in 2017, it showed that 93% of people with ALS using cannabis believe it successfully relieves pain associated with ALS, including muscle cramps and spasms.

Some of the side effects of using cannabis include increased appetite and dry mouth, which can be advantageous to people with ALS who are experiencing weight loss and increased saliva production. It can also help with insomnia, speech and swallowing. In addition to the physical relief cannabis use can provide, it can also have a positive emotional and mental impact, improving attitude, hopefulness, stress and anxiety. All of this combined can make living with ALS easier.

Types and Methods

For people with ALS, a variety of methods can be used for cannabis intake, including smoking, oils, pills, edibles and topical treatments. Smoking can be complicated due to the damage it can cause to the respiratory system, especially considering that ALS already has an effect on respiratory muscles. Oral sprays are also available, as well as cannabis-infused lotion and patches that can be applied to muscles that cause pain, cramp up or become stiff.

Both THC and CBD can be helpful in relieving symptoms and potentially slow down the progression of the disease. Either method can be utilized depending on what the individual with ALS is seeking in the way of treatment and what their state laws allow.

Testimonial from Our Region

“I am probably the best that I have been in several years! All of my vitals are perfect, my recent blood work was better than ever and I feel good. Everyone says that I look better than I have in years! I have been in the medical marijuana program for a year and a half and even though I used it prior to that, the quality and different medical strains make a huge difference. Nothing else has changed in my daily regimen. There’s still a stigma around medical marijuana so I try to share my 16.5 ALS year story to people like you that can share it with other PALS and CALS and that I will help them with anything if they are receptive. I’m knowledgeable and willing to assist.” –Barry C. from IL, 2017

Issues and Concerns

One of the biggest issues regarding cannabis use is the fact that it is not legal everywhere and it can be hard to obtain or expensive even if it is legal. There is also a stigma around cannabis, which could limit people with ALS who use cannabis from disclosing their use to their doctor, limiting important health conversations.

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The side effects to cannabis can also keep people from seeking it out. Cannabis can make some feel detached and others felt they relied too much on its numbing qualities to avoid the reality of their diagnosis.

Although there have been several studies testing the effects of cannabis on mice with ALS, there have been no clinical studies on the effect of cannabis on people with ALS. This is a topic that would benefit from more research and clinical trials, which will be determined as legislation changes over the next several years. As its effects are studied more in-depth, its association, help or detriment with ALS symptoms will become more clear.

For more information on the ALS Association St. Louis Regional Chapter, visit http://www.alsa-stl.org.

*The ALS Association strongly supports and advocates for people living with ALS and their families the right to choose therapies and/or treatments. We believe that the use of medical marijuana in the treatment of amyotrophic lateral sclerosis is a decision that should be made by the person with ALS in consultation with a physician and family. We believe the decision regarding this treatment option is entirely a matter of individual conscience and should consider potential benefits, harmful effects and legal consequences.

The mission of The ALS Association is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support. We believe alternative medical treatments should be based on results from controlled clinical studies and should be subject to the same standards applicable to other prescription medications and treatments such as quality, safety and efficacy.