Marijuana use is on the minds of many patients with multiple sclerosis, a new survey shows.

One quarter of them report having used it in the past to control their symptoms, 16% are current users, and a good many have discussed using it with their doctor, according to the survey, carried out by the North American Research Committee on MS (NARCOMS).

The results show that a large percentage of patients with MS are interested in the issue of marijuana, said Stacey Cofield, PhD, associate professor, Department of Biostatistics, School of Public Health, University of Alabama at Birmingham. “This can advance the conversation and perhaps assist with people who would be willing to enroll in clinical trials.”

Dr Cofield discussed their findings at the Consortium of Multiple Sclerosis Centers (CMSC) 2015 Annual Meeting).

“Fantastic” Response

Researchers invited all 12,260 NARCOMS participants to complete an online survey in August 2014. To ensure confidentiality, the survey was anonymous and separate from the NARCOMS website and database.

It was intentionally short - only about 25 questions - and took only a few minutes to complete.

The response - 5665 patients with MS - was “fantastic,” said Dr Cofield. About 78% of the sample was female, and the mean age was about 55 years. Their mean age at MS diagnosis was 37 years.

Just under 50% of the participants said they live in an area where using marijuana is legal to some extent. This coincides with about half (26) of the US states and the District of Columbia now having laws allowing at least some medical marijuana use.

Respondents were asked about their past and present use of marijuana in any form, including smoking it or using it in an oil or spray. They were also queried about whether they had spoken to their physician about using marijuana.

About 25% of respondents said they have used marijuana for their MS, and 16% reported being current users, defined as using marijuana in the last 30 days. Their median use was 20 days per month but ranged from 5 to 30 days. Their preferred mode of administration is pill (47%) or topical (28%) form, with 22% each opting for an oil or smoking.

Some 82% of survey participants indicated that they would consider using marijuana if it were legal in their state. Whether they have used it or not, more than a third have spoken to their physician about using marijuana.

Willing to Talk

“There is a lot of talking about it in the news from a political standpoint, but patients, or the people living with MS, seem to be left out of the discussion,” said Dr Cofield. “I think it’s clear from our responses here that patients are willing to talk about it, even the patients who aren’t taking it.”

Most people who have tried marijuana said it helped in at least one domain, for example, to control pain or spasms or to improve mobility, said Dr Cofield. She noted that only about 5% said it didn’t help in any way.

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About 10% of respondents reported having progressive disease with no relapse history, with the rest having a relapse history. The researchers divided the relapsing-remitting patients into active (having relapsed within the last 2 years) and stable (not having had a relapse for at least 2 years).

The researchers also differentiated patients according to their disability as measured by the Patient-Determined Disease Steps (PDDS), which is highly correlated with the Expanded Disability Status Scale (EDSS). The median PDDS score was 3, which indicates early gait disability (the scale goes from 0, for normal, to 8, for bedridden).

“So they have some issue with walking but not enough that they need a cane on a consistent basis for any duration,” said Dr Cofield.

Middle Range

The analysis showed “an arc,” with the highest percentage of current users in the middle of the disability range, “which happens to be where most of our relapsers are,” said Dr Cofield. She explained that those with more severe mobility may have less access to marijuana or feel it would no longer be beneficial for them.

Researchers also looked at spasticity as measured by a 5-point scale, with most patients “sitting at a 2 level, which is mild,” said Dr Cofield. The survey found that increased current usage correlated with increased spasticity scores.

“Those with higher spasticity scores - in the 3 and 4 range - seem to be reporting higher current marijuana usage,” said Dr Cofield.

The analysis showed that the likelihood of being a current marijuana user was lower for those with stable relapsing disease, lower PDDS scores, and lower spasticity scores.

A session attendee commented that while patients may be openly talking about marijuana, physicians are less willing to do so.

Another delegate asked whether the researchers had asked participants about falls while under the influence of marijuana. Dr Cofield said that NARCOMS will be asking patients about falls later this year and so may be able to look at the effect of marijuana use on falls in the future.

Yet another symposium attendee felt that the 16% current usage rate seems low and that the impression in the MS community is that a higher percentage of patients are actually using it.

But Anthony Feinstein, MD, professor, Department of Psychiatry, University of Toronto, Ontario, Canada, who has researched marijuana use among patients with MS, said the 16% current usage rate uncovered by the survey “certainly fits with my data.”

But he stressed that the numbers he has been looking at are too small to produce “epidemiological-type data.”

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Consortium of Multiple Sclerosis Centers (CMSC) 2015 Annual Meeting. Platform Presentation. Friday May 29, 2015.