Despite the existence of conventional medications to manage multiple sclerosis (MS) symptoms, a majority of patients also rely on alternative therapies, including vitamins, exercise and marijuana, a new survey suggests.
For the study, researchers at Oregon Health and Science University in Portland asked MS patients if they used "complementary and alternative therapies" -- medicines and practices outside of standard medical care.
A majority of just over 1,000 respondents said they used some type of alternative therapy, including marijuana, vitamins, herbs and minerals, plus mind-body therapies like exercise, mindfulness, massage and various diets.
An earlier survey, conducted in 2001, found some people regularly used these therapies -- and many found them helpful -- but only 7% were talking to their doctors about them.
"It was a little bit of a wake-up call to physicians that they need to be more educated about complementary or alternative therapies, and then consider these therapies as part of the overall treatment plan for their patients," said lead author Dr. Elizabeth Silbermann, a neurology fellow.
MS is a potentially disabling disease that results from the immune system attacking the nervous system and damaging nerves. Symptoms vary, and while some patients eventually lose their ability to walk, others may experience only mild symptoms. MS has no known cure, but treatments can slow the disease's progression and help patients manage symptoms.
"We have a lot more treatment options for our patients, and we're treating our patients earlier than we ever did before," Silbermann said.
But now that there are so many more medications, the researchers wanted to know if people are still using complementary or alternative medicines.
To find out, Silbermann's team surveyed MS patients in Oregon and Washington between August 2018 and March 2019.
The investigators found that 80% of respondents used dietary supplements (such as vitamins, minerals, and herbs) compared to 65% in 2001.
Around 70% reported using conventional medications to manage their MS symptoms.
The percentage using mind-body therapies (such as mindfulness and massage) nearly tripled -- 39% of current patients, up from 14% in the earlier survey. More than eight in 10 were exercising, an increase from 67% in 2001.
Good evidence for exercise
Exercise is one of the only alternative therapies in the survey that has strong evidence of success in curbing MS symptoms.
"This is a disease that does cause physical disability and weakness, so it's very natural to refer patients to physical therapy and to encourage them to be physically active," Silbermann explained. "There's pretty good evidence that things like stretching can be helpful for MS-related muscle tightness, and that staying physically active and doing some aerobic exercise can be very helpful for our patients."
In the current survey, about 30% of participants reported using marijuana in a variety of forms. Pot is legal in Oregon and Washington, where the study was conducted, potentially limiting generalization of the results.
There is some evidence that marijuana can help patients with muscle "spasticity" or tightness.
"When you ask patients to report how tight their muscles feel, they will report consistently that their muscles feel less tight when they are using cannabis, which is great," said Silbermann.
Pot's pros and cons
Sean Hennessy, an epidemiologist at the University of Pennsylvania Perelman School of Medicine in Philadelphia, said, "One of the few uses for cannabis-based products for which there's reasonable evidence of effectiveness is muscle spasticity associated with multiple sclerosis."
Hennessy was involved in a 2017 report from the National Academies of Sciences, Engineering, and Medicine that synthesized available information on cannabis products and their use in medicine.
But pot can potentially exacerbate existing MS symptoms, including muddled thinking and memory problems. Silbermann said that "it goes to show us that everything does have a side effect that we have to consider as part of an overall treatment strategy and plan."
One of the most significant findings of the new survey was that over half of respondents said they spoke to their doctors about their use of alternative medicines, compared to the dismal 7% in 2001.
Silbermann said she hopes this is because patients feel that physicians are more accepting and knowledgeable about other treatment options. However, not enough is known about alternative therapies for physicians to decide which are safe and effective, she added.
Physicians need to know what supplements or drugs you might be taking for many reasons, but especially to ensure that the medications they prescribe don't have any potentially negative interactions. But alternative medicines like supplements and cannabis are not well-regulated or well-studied, limiting the ability to assess their safety and efficacy.
"It's hard to know exactly what you're getting. So there's always a concern about the purity of whatever you're taking, and that's especially true in cannabis," Silbermann explained.
According to Hennessy, there are not enough referenced resources that physicians can rely on to know what medications interact poorly with cannabis.
"So, yes, it's a good idea to tell your physician if you're using cannabis, but they don't really have anywhere to look to see whether cannabis interacts with whatever other drugs you're taking," Hennessy said.
Silbermann stressed that more research is needed to back up any recommendations about alternative therapies. "It's an entire other field of medicine, and I think that we're just learning how important it is to our patients," she said.
The results were recently published online in the journal Multiple Sclerosis and Related Disorders.
There's more about multiple sclerosis at the National Multiple Sclerosis Society.