Photo by Sonya Yruel. Courtesy of the Drug Policy Alliance.

Medical Cannabis Patients Still Rely On Trial And Error To Determine Their Dosages

Photo by Sonya Yruel. Courtesy of the Drug Policy Alliance.

 
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by Angela Bacca

on February 11, 2015

When using cannabis for the first time, how does a patient determine dosage? Are there strains that work better than others for treating specific conditions? Unfortunately, there is very little research when it comes to dosing medical cannabis, and doctors are not yet trained in the subject. In the absence of guidance from trained medical professionals, the majority of patients using medical cannabis must find the answers to these questions on their own.

Cannabis is still a Schedule I, illegal substance according to the federal government, and some deeply-ingrained societal stigma is still associated with its use. That said, the legal statewide markets for cannabis use are becoming increasingly sophisticated. Products purchased from legal shops bear no resemblance to old-school ‘street bags’ and ‘pot brownies.’ But, since any scientific research that looks into the efficacy and safe use of cannabis has been restricted in the U.S. for decades, there is no adequate way for patients to determine their appropriate dosage or method of ingestion. Patients have to go through years of trial and error to determine their ideal cannabis regimen. In addition to bearing personal responsibility to educate and dose themselves, patients’ medical insurance doesn’t cover the sometimes prohibitive cost of cannabis medicine. So, some patients who would ideally be taking stronger doses of cannabis simply can’t afford it.

While it is currently impossible to determine the appropriate dose of cannabis medicine for any condition in specific terms, many patients have come up with regimens to fit their personal needs through online discussions, and trial and error.

In legal shops, doses are measured in milligrams of ∆9-tetrahydrocannabinol (THC). While THC is not the only “active” ingredient in cannabis (there are over 108 identified “active ingredients,” all with medicinal value), THC is usually found in the highest concentrations. Because it is psychotropic (or creates the feeling of a “high”), THC is used as the metric to label cannabis products.

Synthetic THC, aka Marinol, is prescribed in therapeutic doses of 5 to 15mg. Marinol, however, is pure THC unregulated by the other medicinal compounds occurring in cannabis. Its effects are wildly different than whole-plant cannabis and many patients say it is not as effective.

In Colorado, a standard “dose” of an edible in a recreational shop is 10mg THC. Some patients might become intensely stoned from this dose while others might barely feel the effects, depending on their condition, body type and frequency of use. In medical marijuana stores, single-dose edibles can contain 300mg of THC or more.

Although most cannabis patients will undoubtedly continue with trial and error dosing, new software aims to make the patient’s personal research easier to track and share with others. Medicate Mate, a soon-to-be available phone app for Android and iPhone, aims to create real-time data for patients and researchers.

“Medicate Mate intends to be a resource where patients will learn how to most effectively use cannabis,” said Corey Hunt, co-founder of Medicate Mate. “Finding what works best is very difficult without support and education. Our social community will allow patients to connect directly with each other and the community for real-time data.”

But, without a doctor to work with when determining dosage, most patients must “titrate” their dosage. Titration means starting with very small doses, maybe a 1mg puff from a vaporizer, and waiting to feel the effects before using more. Often this process takes years and is ongoing.

How Patients Dose

Sharon Letts is going through menopause while battling thyroid disease and recovering from breast cancer. She says for Baby Boomers like herself, menopause and thyroid disease are a “double whammy” because there are up to 85 symptoms associated with thyroid disease and 35 with menopause. The result is extreme fatigue, depression, mood and weight fluctuations — and even suicidal thoughts — among other symptoms.

Letts is a former television producer and current freelance journalist living near Eureka, California. Eureka is in the heart of an area known as Emerald Triangle, named for the unmatched number of cannabis businesses and grows — legal and illegal — that dot the region. She says four years ago she was suicidal and taking eight or more prescriptions. After a suicide attempt, a mast was found in her chest and she was diagnosed with breast cancer. When she received the diagnosis she began consuming high-dose full extract cannabis oil, a black tar-like oil containing between 50 and 90 percent THC.

Full extract cannabis oil (FECO), also known as Rick Simpson Oil (RSO), is named for the Canadian cancer patient who vigorously promoted the cannabis extraction method as a cure for cancer. While there is some debate about the distinction, the primary difference between FECO and RSO is in the solvent used to extract it: RSO is extracted using naptha, a petroleum-based solvent, and FECO is produced using a food-grade alcohol such as everclear as a solvent. The extraction method creates high-potency oil and some patients take up to a gram a day, or between 500 and 900mg THC, while treating cancer or other serious illnesses.

“As far as my doctor is concerned, she watched me go from overweight, suicidal and very sick, to not on any prescription meds,” Letts said. “Now she is documenting everything I am going through with cannabis and she is totally on board.”

Letts’s situation is atypical; her doctor now works closely with her to monitor how cannabis improves her day-to-day functioning and even does additional research. Letts says this is likely because she lives in the heart of the nation’s marijuana capital and many of her doctor’s other patients also use cannabis.

As far as dosing though, Letts says she doesn’t measure.

“You can’t OD on it, right? I just keep it in my system all the time,” Letts said. “All my oils I use for cooking in the kitchen, all my vinegars and butters — everything is infused. The honey is infused, the maple syrup is infused, anything I can infuse, I infuse.”

She takes FECO daily, eats cannabis in all her meals, smokes and vaporizes, rubs it on her skin and even juices fresh fan leaves in the morning — an efficient way to consume high doses of THCa, a non-psychotropic form of THC that is a powerful painkiller (in other words, you get the medicinal benefits of THC, without the “high”).

Where Letts lives, it is much easier to access, possess and medicate with cannabis than most parts of the world. In some parts of the U.S., attempting to access medical cannabis still costs patients their freedom, livelihoods and families.

Jacqueline Patterson is a cerebral palsy patient who also suffers from PTSD from various traumatic life events. The cerebral palsy affects the right side of her body and makes speaking and moving difficult. She also suffers from chronic pain due to a car accident. Patterson was forced to relocate from her home in Kansas City, Mo., to Northern California in order to remain the guardian to her child. (You can see her describe her story in the video below.)

“Right before I left Kansas City I told my doctor [I was using] and she threw a fit and refused to write me a letter I needed,” Patterson said. “She was one of those doctors who spends more time with the pharmaceutical companies than she does with patients.”

Patterson says living in Missouri means her legal use of cannabis still comes with a stigma and therefore guilt, which causes her to under-medicate at times. She has no idea what her daily dosage is but she usually titrates with cannabis concentrates until she feels she has met the right dose. Sometimes finances make it hard to obtain the quantity she needs, so she often doesn’t get the right dose.

For patients in states where cannabis is completely illegal, not only is medicine not tested — making it impossible to even estimate dosage based on THC content — but there is little to no product consistency.

Christine Stenquist, a patient with an acoustic neuroma (a benign brain tumor) and fibromyalgia in Kaysville, Utah said she’s had to rely entirely on the Internet to learn how to use cannabis.

“You don’t have any guidance on how to dose,” she said. “For me, dosing is a balance of finance and tolerance and how to manage those particular things. It isn’t covered by insurance.”

She continued, “I used to get upset because I had nobody to ask and I was worried the NSA was gonna track me Googling cannabis. I just pushed through the desperation and said, ‘OK, I gotta figure this out.’”

Stenquist vaporizes for about an hour when she wakes up in order to combat nausea and dizziness. Once she is able to stomach food she takes 0.2 grams of FECO. She uses a portable vaporizer and tinctures during the day and finishes with another 0.2 grams of FECO in the evening. She has no idea what her daily intake of THC is.

Although half of U.S. states now have some sort of medical marijuana program, many only allow patients with certain conditions to qualify for medical marijuana. In Washington State, not all medical cannabis patients are covered under the law.

Erin Palmer suffers from Ehlers-Danlos syndrome, a genetic connective tissue disorder that affects her entire body. She has chronic nausea and vomiting due to gastroperesis and severe IBS.  On top of that, she also has chronic joint pain and arthritis in all her joints, severe scoliosis, muscle pain, anxiety, panic disorder, PTSD and neuropathy.

“Let’s see, what else?” she laughs. “I use it for both qualifying and non-qualifying conditions.”

She says her gastroenterologists are extremely supportive and her psychiatrist has even recommended strains for her to use, but none have actually educated her on how to use it and what dosage would be most effective.

“It has been a long time of trial and error,” she said. “I used both inhalable as well as full extract cannabis oil. I would medicate more with cannabis oil if I could afford to.”

Palmer consumes about 0.25 grams of FECO daily to treat her symptoms. She does not know the potency of her oil because it is untested — she gets it donated by a grower so that she can afford to take it. In addition, she smokes or vaporizes about one to two grams a day. She would also like to juice fan leaves for THCa but cannot afford to.

“I just wish [my doctors] would get some training in it,” Palmer said. “Here in Washington, anxiety disorder, PTSD and other mental illnesses are not qualifying conditions and I wish that people in the medical field would become more educated on how that can be helpful for those conditions.”

Regardless of whether they are using cannabis, many patients often find themselves self-healing completely outside the traditional healthcare system because they feel the mainstream system is more profit-driven and drug-centric than focused on healing.

Seth Matrisciano suffers from both Crohn’s Disease and malrotation of the gut and has been a card-carrying patient in California for 13 years.

“The cannabis specialists tell me I am one of the people this law was written for,” Matrisciano said. “They are excited to have me as one of their patients.”

But not all his doctors have been helpful. His first gastroenterologist claimed he would lose his license by recommending cannabis to him.

“He said anything he could to persuade me not to go down the cannabis route and to stick with immunosuppressants,” Matrisciano said. “I think his motivations were purely financial.”

Matrisciano says patients shouldn’t expect their primary care doctors or specialists to understand cannabis. He suggests instead that patients rely on doctors who claim cannabis as a specialty. He has been vigorously researching his condition for most of his adult life and has arrived at a cannabis and lifestyle regimen that works for him, irrespective of the mainstream healthcare system.

As far as dosing, he says he goes through one-quarter to one-half pound of flower cannabis a month — or one eighth to a quarter of an ounce daily — often processed into concentrates. He also says he believes cannabis should be treated more like an over-the-counter drug than a pharmaceutical prescription. He says dosage is a day-to-day thing and not something a doctor can actually determine. One day a patient may need a hit or two and another they may feel the need to consume a few grams or more, he says.

“It is about having enough,” he said.

He also thinks that strain-specific cannabis medicine is a bit of a fallacy and that best results have been achieved by mixing it up. Like many other patients, he says saturation is key, but cost is prohibitive.

Lindsey Rinehart, a patient with multiple sclerosis who relocated from Idaho to Oregon in order to treat her condition, says her strategy is to completely saturate her system with cannabis.

“It has always been my mindset to just put more cannabis in, I fill my body with as much of it as I can take,” she said. She estimates she consumes up to 800mg of THC daily, mainly baked into foods. She makes her own cannabis-infused butters and oils in order to save on cost.

“There are times I can’t afford that; if I could always afford that I would,” she said. “I work really hard for the medication I get so I can have it — it’s my health.”

Rinehart says she has been going through trial and error dosing for about three and a half years and even went off 22 pharmaceutical drugs using cannabis, without the guidance of a doctor. Now her MS is in full remission.

“Doctors don’t have the kind of firsthand knowledge that the community has,” she said. “When I share information with a neurologist about how I treat my condition and how it feels and the pills that I have replaced, they are blown away. They don’t know what to think of it. They don’t understand that one plant can be used to treat so many different things. They are used to 15 different pills, not five different methods of ingestion that all work.”

For some patients, cannabis is ideal because it can be inhaled rather than swallowed like a pill.

Andrew Williams has cyclic vomiting syndrome and uses cannabis to combat his constant nausea and anxiety, and to stimulate his appetite. Doctors prescribe Williams anti-nausea meds which are mostly ineffective — he can’t keep the pills down long enough to work, so inhaling is most effective.

When Williams cannot stop vomiting he becomes dehydrated, which has caused seizures in the past. He wakes up nauseous every morning and must wait 15 to 45 minutes to let his stomach settle before he takes a “dab” of high-potency cannabis concentrate, stimulating his appetite and allowing him to stomach breakfast. He says he consumes a quarter-gram a day of high potency concentrates but tries not to ruin his tolerance by using too much.

“This has destroyed my life,” he said of his illness. “I don’t work, I just hang out and try to feel good all day. Cyclic vomiting is misunderstood, it’s called an invisible disease.”

Williams’ doctors are not supportive of his cannabis use and he remains on some pharmaceutical drugs.

Battling Inconsistency And Stigma

While some patients know they need cannabis, they still battle internalized societal stigma when using it as a medicine.

“I have always been honest about my cannabis use, even when I thought I was giving myself lung cancer and killing my brain cells,” says Theresa Knox.

Knox is diagnosed with soft bipolar disorder and PTSD — conditions that only qualify for medical cannabis access in a few states. She says she has always been honest with her doctors about her use for fear of drug interactions with pharmaceutical prescriptions.

She says stigma from friends and family members over her use has pressured her to use less than she needs at times.

“There were times where I thought I should quit, but obviously when I didn’t have [cannabis] I would feel terrible,” Knox said. “Somehow I knew it wasn’t an addiction problem.”

Over the last 5 to 6 years, Knox has been researching and self-educating. Now she does not feel as stigmatized by her use. Still, she is another saturation-user who consumes cannabis all day long and she has no idea how much.

“I sound like a terrible pothead addict, but the more I have in my system, the better I feel,” she said. “When I don’t have it, it is hard to get myself out of the house and deal with life.”

Although most doctors know little about cannabis and how it works in the human body, researchers are working to unlock the potential of cannabis medicines and offer better insight on patient use and outcomes.

Jahan Marcu, PhD., is director of research and development at Green Standard Diagnostics, Inc., and a well-known cannabis researcher. He says inconsistency of regulation is a big issue.

“A uniform regulatory system based on industry-approved standards is currently being implemented through third party certification,” he said.  “But the same products aren’t available in all states, and the qualifying medical conditions are also inconsistent. It is hard to think of a way to say how patients should be consuming because of the lack of standardized products and the same medical conditions are not recognized by each state.”

Because of a lack of uniformity, it is hard to say what strains are more effective for specific conditions, or how often and in what way patients should consume cannabis.

“Strain-specific symptom relief is like the holy grail of medical cannabis, this is something people have been thinking about for over a decade,” Marcu said.

He says it is tricky to even determine how much patients are using when they inhale cannabis — the most common method of ingestion — because when cannabis is smoked the act of lighting it on fire destroys some of the material and patients don’t inhale and absorb the smoke or vapor uniformly.

“People are experimenting with delivery systems and it is largely being driven by the industry right now. There are projects going on behind closed doors in private institutions, but we won’t really know about those until they are ready to be used in a clinical trial,” Marcu said.

Still, he says even researchers are looking to the patients for the answers. Many scour online forums and blogs looking for anecdotal evidence. He says patients already titrate with other medications as well, and perhaps the best way to dose cannabis is to “use as needed.”

If a patient wanted her doctor to learn more about cannabis, she could ask her doctor to attend a cannabis medicine conference such as Patients Out of Time or take a class with the Cannabis Training Institute for continuing medical education (CME) credits. Doctors are required by law to take CME courses throughout their career. Oaksterdam University, a cannabis industry vocational training college in Oakland, California, is another credible venue where doctors can learn more about medical cannabis. They plan to offer CME credits by the end of this year.

*The information in this article is not intended to diagnose or treat any diseases or conditions.

Angela Bacca is a Bay Area-based writer, journalist, photographer and medical cannabis patient. She has been working in cannabis media for seven years, starting with Ed Rosenthal’s Quick Trading Company, where she continues to collaborate on editorial projects. She is the former editor of Cannabis Now Magazine as well as the former managing editor of Ladybud Magazine. She currently freelances for a wide variety of cannabis media including Reset.me, Alternet.org and Cannabis Now Magazine. Bacca has a bachelor’s in journalism from San Francisco State University and a master’s in business administration from Mills College.