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Cannabis for Gaucher Disease Pain

Chronic joint pain is a common symptom of Gaucher disease. This pain can be mild or quite severe, especially in untreated or undiagnosed Gaucher disease. Even people who are following treatment may still experience discomfort.

Researchers are finding increasing evidence that medically applied cannabis may offer safe, effective relief for Gaucher-related pain. Robin Ely, MD, Founding Member of the National Gaucher Foundation, current Clinical Director of the NGF Global Diagnostic and Treatment Initiative, and a cannabis medical provider in Maryland and Florida, recently published the results of a survey. It reports that over 30% of individuals with Gaucher disease utilize cannabis products for pain relief.

Gaucher Disease Pain: Why It Happens

“People with Gaucher disease, even those who are on standard treatment, typically experience chronic low-level, or sometimes more intense, joint pain and muscle aches,” says Dr. Ely. “Some call this associated fibromyalgia or chronic musculoskeletal pain. It’s mostly in the larger joints, such as the shoulders, elbows, hips, and knees, and also may occur in the neck and lower back.”

This pain comes from chronic inflammation that occurs with Gaucher disease. “Currently established treatments, including enzyme replacement therapy (ERT) and substrate reduction therapy (SRT), substantially improve most Gaucher disease symptoms,” says Dr. Ely. “However, many people, even when they’re on therapy, are not getting total relief from pain.”

Managing Gaucher Disease Pain

People experiencing the aches and pains of Gaucher disease often turn to over-the-counter pain relievers such as Advil® (ibuprofen) and Tylenol® (acetaminophen). These pain relievers are not recommended on a long-term basis because of the risk of gastrointestinal bleeding and other side effects. When people do not get relief from over-the-counter pain relievers, or cannot take these medications long term, they look for other options to relieve pain, including but not limited to cannabis.

In Dr. Ely’s recent survey of people with Gaucher disease, cannabis users reported slight to substantial improvement in:

  • Muscle pain (84 percent reported improvement)
  • Bone pain (82 percent)
  • Joint pain (82 percent)
  • General achiness (67 percent)
  • Mobility (55 percent)

How Does Cannabis Help Chronic Pain?

The power of cannabis for pain lies in the many different actions it has on the body. It decreases pain signals and the perception of pain. It also decreases the inflammatory molecules that trigger pain signals. And with correct usage, it’s very safe and has few side effects, Dr. Ely says.

Cannabis helps with pain because it “contains many different molecules that interact with the human system,” says Dr. Ely. Examples of these active compounds include:

  • Cannabinoids
  • Flavonoids
  • Polyphenols
  • Stilbenes
  • Terpenes

The molecules affect many different areas of the body. “They act on the joints, brain, muscles—almost all parts of the body because our bodies have an endocannabinoid system,” Dr. Ely says. “This system, which includes receptors in all parts of the body, responds to the molecules in this plant. Why is that? Essentially, it’s because we co-evolved with it.”

The time range for relief with medical cannabis depends on both individual body chemistry and the method of delivery.

Typical responses are:

  • Smoking or vaporization: 10 to 20 minutes until pain relief, which may last one to three hours
  • Tinctures: 30 minutes until pain relief, which may last three to five hours
  • Gummies and other edibles: 30 to 60 minutes until pain relief, which may last five to eight hours

Risks of Using Cannabis for Pain

Allergic reactions to cannabis are extremely rare, although some people react with coughing or increased mucous to inhaled cannabis through smoking or vaporization. The bigger challenge relates to both the availability of suitable products and how growers have manipulated the plants in recent years.

Challenges With Cannabis Product Composition

“The two compounds in cannabis that many people know about are tetrahydrocannabinol (THC) and cannabidiol (CBD). THC is responsible for the ‘high’ that is experienced. Over the last 40 plus years, growers hybridized the cannabis plant in order to increase the THC content, which decreased the amount of CBD and hundreds of other compounds. This was for commercial reasons, but it ended up being a mistake,” says Dr. Ely. “The original plant was much more balanced. Excessive THC is responsible for the anxiety, uncomfortable sensations, and panic attacks that some people experience, as well as cannabis use disorder. The original plant was a much more balanced healing plant.”

However, growers are beginning to realize that there is a very large population of people who want to use cannabis for pain relief, not for the high. This includes individuals whose pain is related to Gaucher disease.

There are now more than 10,000 strains of cannabis, and an increasing number of those are being produced to be much more balanced. There are also tinctures, gummies, and other edibles made from these more balanced plants that are being used by those seeking pain relief.

Challenges With Cannabis Product Availability

“Cannabis has been used for thousands of years. In the last two hundred years, it was an accepted treatment for various conditions in the U.S., Europe, and elsewhere,” says Dr. Ely. “In the 1940’s it fell out of favor for many complex non-medical reasons. Eventually, it became illegal. In the last couple of decades, it has been legalized again in the majority of states in the U.S. and in multiple countries.”

However, the availability of products varies from state to state, and sellers can’t sell across state lines. Products found in adult-use cannabis shops are often different from medical cannabis dispensaries. “If I buy a bottle of ibuprofen, it is the same in any store across the country. That is not the case with cannabis products, and that is a significant limitation,” says Dr. Ely.

“Another issue is that medical providers who are certified to recommend cannabis in legal states may not really have much understanding of the plant, of the various forms or dosages their patients should take, in part because there are so many different products,” says Dr. Ely. “Sometimes, the people who work at medical dispensaries know much more about the plant than the physicians who are cannabis providers. It can fail because people are taking the wrong product and the wrong dose. I have seen this repeatedly. There is ongoing research, but we need more information.”

Given these limitations, Dr. Ely still encourages people to explore cannabis as an option.

How to Approach Using Cannabis for Pain

It’s ideal to find a knowledgeable medical cannabis provider in your state. A provider can advise you on products to try based on your needs. Dr. Ely welcomes questions about using cannabis for pain. She can be reached via the contact form on the National Gaucher Foundation website.

How the National Gaucher Foundation Can Help

If you or a loved one lives with Gaucher disease, the National Gaucher Foundation is here for your family. We offer resources to optimize your health with Gaucher disease and connect you with the support you need.

 

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