Exploring the possibility of CBD therapy as someone with HAE
My research revealed several crucial points to keep in mind
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Note: This column describes the author’s own experiences with cannabidiol. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.
Living with a rare disease looks different for everyone. Many of these conditions involve pain, and the mental health impact can be overwhelming. While my primary health issue these days is hereditary angioedema (HAE), I also live with chronic Lyme disease, long COVID-19, arthritis, neuropathy, and more, all of which cause various levels of discomfort.
To manage my physical and emotional distress, I work constantly to improve my well-being as naturally as possible. I eat a clean and healthy diet, exercise regularly, drink plenty of water, and get about eight hours of sleep each night — all the recommended strategies — but increasingly, it isn’t always enough.
Last year was particularly difficult for me, both mentally and physically. I was dealing with a lot of external psychological pressure as well as internal bodily discomfort. Therefore, my first order of business was to speak with my doctors. Unfortunately, I was either deferred to another specialist or told to just “wait and see.” To say I was frustrated is an understatement!
What is CBD?
My wonderful husband and caregiver, an old-school hippie who always wants to help, repeatedly suggested I try cannabidiol, or CBD, either internally or externally for my pain management. I was raised in a strict “say no to drugs” home, so the idea didn’t land well with me at first. However, the lack of direction from my doctors led me to consider trying alternative therapies, including CBD.
With January being National CBD Month, I recently began conducting my own research. I learned that CBD is one of the active ingredients in cannabis. Unlike tetrahydrocannabinol (THC, another component of cannabis), CBD is nonintoxicating, meaning it doesn’t cause a “high.”
CBD was first isolated and identified in 1940, and has since been studied as a potential treatment for various medical conditions, including epilepsy, anxiety, addiction, and psychosis. Some research suggests that the compound may help with chronic pain and inflammation, but more studies are needed.
It’s also important to note that the legality of CBD varies depending on your location. In the U.S., hemp-derived CBD products containing less than 0.3% THC are federally legal, but each state has different regulations. CBD is fully legal in Colorado, where I live, but it’s crucial to check the laws in your area.
I also learned that CBD is available in a variety of forms, ranging from capsules and tinctures to foods and beauty products. Some types of products may be more suitable than others depending on the desired therapeutic outcome.
Could CBD help me?
Initially, it sounded like CBD could potentially help with my joint and muscle pain. I tried a CBD muscle balm and experienced some relief, but I’m not sure if it was due to the CBD itself or just the effects of massaging it into my skin.
My loving daughter Leah, who also lives with HAE and keeps up with the latest treatment information, noted that it’s possible CBD may interact with some of my prescriptions.
After investigating further, I learned that CBD can interact with certain drugs, affecting their efficacy or resulting in potentially dangerous side effects. A Harvard Health Publishing article notes that these interactions can vary depending on the form of CBD:
“Edibles require longer time to absorb and are less likely [than inhaled CBD] to produce a high concentration peak, although they may eventually reach high enough levels to cause an issue or interact with other medications. Topical formulations, such as creams and lotions, may not absorb and get into the blood in sufficient amount to interact with other medications, although there is very little information on how much of CBD gets into the blood eventually.”
More research is needed into the relationship between CBD and my prophylactic HAE medication, Orladeyo (berotralstat). However, because both substances are processed by the same liver enzymes, combining them could prevent Orladeyo from being metabolized properly, potentially leading to toxic levels of the medication, increased side effects, or reduced efficacy.
CBD may also cause gastrointestinal issues, particularly when ingested. I have been diagnosed with irritable bowel syndrome and mast cell activation syndrome, and my primary HAE symptom is abdominal inflammation. I don’t need anything else to cause digestive problems!
Given all of this, I am still on the fence about using CBD. If I do so, it would only be topically.
If, like me, you are curious about CBD, please be sure to do your own research, check your local laws, talk with your doctor, and cross-check your medications to make an informed decision. Stay safe and healthy!
Note: Angioedema News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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