The neurologist with Premier Neurology spoke about the challenges and state of symptomatic care in multiple sclerosis.
Mary Hughes, MD, a neurologist with Premier Neurology
Mary Hughes, MD
The multiple sclerosis (MS) specialty has experienced an explosion of new medications that modify the disease’s progression, which has, in turn, improved the quality of care that specialists can provide their patients. Although, many challenges persist.
Symptomatic management in MS is still a trial for physicians, as the condition can cause a number of problems for patients outside of neurodegeneration. Chief among those are fatigue, gait issues, spasticity, and cognitive problems. Mary Hughes, MD, a neurologist with Premier Neurology, a partner in care with the National MS Society, told NeurologyLive that due to the increased concentration on developing disease-modifying therapies, some of the attention to the decreased quality of life caused by general symptoms has diminished.
To find out more about the state of symptomatic care in MS as well as the challenges faced by MS specialists and their patients, NeurologyLive spoke with Hughes in an interview.
Mary Hughes, MD: Unfortunately, the majority of symptomatic management for MS has been borrowed from the use in other conditions and specific symptomatic management outside of the FDA approved medication dalfampridine (Ampyra, Acorda) which was designed to help with walking. There aren’t great examples of medication that are designed specifically for use for people in multiple sclerosis and that’s a challenge for many reasons. One is what impacts the quality of life to day-to-day, more than anything else, is the symptomatic management. There’s a lot of focus in the disease-modifying treatments, and they’re obviously very important when we’re talking about long term prognosis, but your bladder control is what’s going to affect your day-to-day quality of life much on a much greater scale for right now.
And so, if we look at some of the most significant symptoms that people with MS struggle with, the best example is probably fatigue. There is no FDA approved medicine for fatigue management in MS. We use a wide range of medications to try to manage that, but a lot of it is non-pharmacologic to make sure we address pain and address some of the issues that are more apparent during the night. For example, spasticity management and bladder control—if you’re up 6 times a night to go to the bathroom, you’re certainly not going to start your day out rested. But when we talk about fatigue, and that’s probably the best example, we often are using off-label medications like some of the stimulants that are commonly used for attention deficit disorder, or some of the wake-promoting medicines that have been used with other conditions like excessive daytime sleepiness, but aren’t FDA approved for specifically MS. That leads to challenges of access, regardless of whether or not a patient has had a good response to them or not.
It’s a lot of borrowing. There is a trial going on now that’s looking at repurposing another medication to help with gait. But, for the vast majority of the symptoms we have for MS, unfortunately, we are using our clinical skills from other conditions and applying them in the field of MS.
The symptoms that are the most likely to take a patient out of the workforce with MS are fatigue and cognitive dysfunction. For fatigue, it’s very as much a multi-factorial cause, but there is fatigue that is just intrinsic in MS. If you’re having trouble walking, we can help with assisted devices and mobility devices. We can get you from point A to point B, but it’s very hard to accommodate for fatigue in the workforce. Using some of the medicines that we’ve used for excessive daytime sleepiness to try to address fatigue can certainly help people remain in the workforce for longer periods of time and remain effective in their day-to-day lives.
The challenges people with MS have with cognition are not like those with an Alzheimer type. They don’t lose their fundamental knowledge, but they can very easily distractible, have problems with concentration and focus, and you can see where it can be very natural to try some of the medicines that would be used for ADHD. That can be very effective for many people living with MS. Access can become an issue—there is an ongoing challenge getting insurers to cover meds off-label. There is an excellent example of a medicine that’s used, and FDA approved for burning neuralgia, for people with a burning sensation, predominantly in people with diabetes, and yet people with multiple sclerosis can have burning paresthesia. This is one of the biggest challenges in trying to use the medication for a different disease process. If you have a burning neuropathy, that obviously has an enormous impact on quality of life and comfort.
The challenge from a physician standpoint is that MS is a field that really is becoming increasingly sub-specialized. The majority of physicians, including neurologists, weren’t aggressively taught how to manage symptoms. Bladder control is a great example. I was never trained during residency and how to manage bladder control. That was something the gynecologist or urologist manages. In a non-surgical ideology, many times it falls back on the practitioner that is managing the person living with multiple sclerosis to manage their bladder control issues. Part of it is the training around that and the access. There aren’t a lot of educational programs offered for bladder management at neurology meetings, and yet, 70% to 80% of people living with MS have some problem with their bladder or their bowels. How do you optimize the care and assess this population when urologists may not be as engaged in managing them because it is coming from a neurological disease and not a structural one?
One of the challenges in healthcare is the coordination of care. It is always a challenge, and generally, we think about perhaps the primary care physician as being the kind of ringleader in making sure all the different kinds of disease states are being managed. For example, with the patient who has cardiac disease and diabetes, the primary care physician may be the person who’s coordinating the care between the endocrinologist and cardiologist. In multiple sclerosis, outside of very large centers that have this multi-disciplinary approach under one roof, this can be very challenging. One of the realities is that many people who have MS are underinsured or uninsured. The other challenge is mobility and the logistics of just getting to a care provider as we’ve become more fragmented in locations among specialties.