The staff neurologist at Premier Neurology, a partner in care with the National MS Society, spoke about how to best overcome the challenges presented by the symptomatic management of MS.
Mary Hughes, MD
The management of the symptoms of multiple sclerosis (MS) has long been a challenge for both patients and providers. The disease is complex and comes along with many symptoms—the majority of which do not have medications specifically indicated for their treatment.
This has led to neurologists and MS specialists like Mary Hughes, MD, needing to rely on creative, off-label use of medicines to ease the struggles of their patients. Additionally, a lack of specialized neurologists who focus solely on MS has made the education surrounding these patients’ treatment that much more difficult, with patients in some areas of the country having only a primary care physician or general neurologist to rely on for the majority of their care.
To find out more about how the landscape of symptomatic MS management has shifted over the last decade, as well as what’s being done to address the challenges and improve the lives of patients, NeurologyLive® spoke with the staff neurologist at Premier Neurology, a partner in care with the National MS Society, in an interview.
Mary Hughes, MD: Ironically, in many ways, before the first FDA approved medicine came to market in the early 1990s, a lot of the care for people living with MS was focused predominantly on symptomatic management. Then, with the disease-modifying treatments, we almost turned our attention away from symptomatic management for the renewed hope that he disease-modifying treatments had in changing people’s prognosis of living with MS. But we kind of forgot along the way that one of the keys is living with MS. That’s where, really, the symptomatic management comes into play—because it’s so important.
Many of the medications we use in caring for people with MS have been around for a long time. For example, in spasticity management. Baclofen has been around forever—I don’t think you can get a brand name baclofen, it’s all generic. For people with more severe spasticity, the intrathecal baclofen pump has been around for almost 20 years, and yet the number of people who are either aware of the access or have been trained in how to manage the intrathecal baclofen pump is small. Really, that’s one of the biggest challenges in access. People aren’t even aware that’s an option, and there are very few people that have been trained in how to manage that.
We kind of have to go back to the roots of treating people with MS and say that symptomatic management was our primary focus for a long time, and we kind of got lost along the way. We need to recognize where the education comes from. There are few fellowship programs in MS, and the challenges with MS is that MS specialists tend to be in urban areas. There are huge parts of the country that are not served by someone who specializes or has a primary focus in MS. So how does this information get to the general neurologist or primary care physician who may be the person who’s most actively involved? When you have medications that have gone generic, there’s very little financial commitment from pharmaceutical companies to research them for other indications, and so as far as new and exciting medications coming out specifically for the treatment of symptomatic management—there definitely is a dearth in that area.
The MS is a field where complementary and alternative treatments have really found a focus. For example, in pain management, the use of massage or acupuncture has occurred. I don’t know if I consider physical therapy alternative, but it certainly is complimentary. Many people are very interested in using supplements and that’s a challenge because the more traditional healthcare providers have not been trained or are not familiar with the use of various supplements in the management in MS. There’s a lot of interest in the use of cannabis and tetrahydrocannabinol [THC]. It’s been shown to help pain control and spasticity, and the National MS Society has supported legislation that would make it more accessible for people living with MS for their symptomatic management.
As far as novel treatments go, I’m not aware of anything that’s in the pipeline right now. There are some medicines being looked at for repurposing. For example, there’s a study being done on amantadine, which is interesting enough. As an anti-viral agent, it’s been used for fatigue management for MS for many years. It’s being looked at in a repurposed delivery system to see if it can be used in a more effective way in MS. A lot of cannabidiol [CBD] and THC compounds are being studied, predominantly in Europe and not so much here in the United States, and there’s a lot of reasons—mostly legislative— for that not are being looked at.
As far as specific treatments, for example, in the cognitive problems in MS—no. There are studies that predominantly focused on wellness in MS, so dietary changes and exercise, and trying to promote from those standpoints. I always say the better you take care of the machine, the better it’s going to take of you. But that’s the direction from which symptomatic management, and I would argue that wellness and disease-modification, has been approached recently.
One of the caveats in medicine is that it’s both a science and an art, and sometimes the science doesn’t take us as far as we’d like it to, and we end up really focusing on the art. We know there is a lot of off-label use of medications, but we’re thinking about that in a creative way. For example, some of the bladder medicines may be more constipating, but if you have someone who has problems with bowel control then that constipating adverse effect may actually be a benefit in this patient. It’s looking at patients in kind of a broader sense and using those skills that they’ve developed and honed with other disease conditions and focusing them in the care of people with MS.
One of the poignant comments that I had from a patient earlier this week was, “At least when I tell you I have a problem you say, ‘we’re going to try and work on that,’ versus just, ‘that’s interesting.’” We need to continue to try to manage these symptoms and be very proactive instead of being nihilistic and saying, “There’s nothing specifically approved for that.” I think we owe our patients the willingness to be creative and embrace the challenges and the complexities of their care. The outcomes and the benefits of doing so far outweigh many of the challenges along the way.