Matt Hoffman, Senior Editor for NeurologyLive, has covered medical news for MJH Life Sciences, NeurologyLive’s parent company, since 2017. He hosts the NeurologyLive Mind Moments podcast, as well as Second Opinion on Medical World News. Follow him on Twitter @byMattHoffman or email him at email@example.com
The multiple sclerosis specialist at Baylor Scott & White Health spoke about which symptoms present the biggest challenges for providers.
Annette Okai, MD
Multiple sclerosis (MS) is accompanied by a litany of symptoms which can compound the disease’s already complex treatment process. Adding to that difficulty is that a number of the symptoms, such as pain and fatigue, while extraordinarily prevalent in the patient population, lack any specifically indicated treatments, which adds additional hurdles for insurance coverage.
Annette Okai, MD, an MS specialist at Baylor Scott & White Health in Dallas, Texas, is particularly familiar with these challenges. With a limited number of FDA-approved treatments, Okai and her peers are forced to approach symptomatic MS treatment from a more roundabout perspective.
To find out more about what the current state of treatment is, and which symptoms are the most challenging of the bunch to address, NeurologyLive® spoke with Okai in an interview.
Annette Okai, MD: As we get to understanding the disease more, there are challenges that come up. It is a very limited field in terms of treating these challenges that come along with the treatment of the disease itself. Until now, we only had 1 approved therapy for symptom management of MS and that is dalfampridine (Ampyra, Acorda), which helps to treat walking symptoms associated with the disease. But MS does affect other parts of the body and does produce other symptoms—actually it affects almost all systems and produces symptoms that can range from cognitive to bowel and bladder, to spasticity, to depression. We do not have approved therapy for those. When trying to treat those symptoms, we run into problems because most of the medications aren’t proven in MS and most insurance companies wouldn’t approve them because they do not have a specific indication for MS.
There are 1 or 2 symptoms that I can think of, the first one that comes to mind is fatigue. Fatigue is very prevalent in the MS population; some studies indicate up to 90% of MS patients suffer from it, but we do not have any approved therapy, once again. We have to go with what’s available on the markets for other indications. Fatigue is very debilitating in that it can affect job performance, social and family life, and that really impacts the patient, especially if they cannot be employed because they have this uncontrollable fatigue that is quite different from what you would experience with anything else.
The issue is that we tend to use central nervous system stimulants to help these patients, but these weren’t indicated when they were approved by the FDA for treatment of MS fatigue. As a result, we run into lots of insurance denial when we try to use these treatments that we know can help patients to get through the day and get through whatever task they have to complete. We’ve used them anecdotally and off label for years, but because they are lacking that MS indication on the label, that puts up a barrier to treating that particular symptom.
The other symptom is bowel problems. Patients with MS have bladder and bowel problems, which can sometimes indirectly lead to sexual dysfunction as well, and this affects both men and women in MS. You have medications for erectile dysfunction that could sometimes work in MS, but once again don’t have an indication for MS. We have problems treating any kind of sexual dysfunction in these patients and they encounter that symptom frequently because of where their lesions are. Other things that we still use off-label indications for are things like tremor. Tremor is another thing that affects MS patients. We treat them with medications for tremor, but that’s also a big issue because that effects dexterity.
Another, I wouldn’t say lesser known, but not really at the forefront of MS treatment, is pain. MS patients experience a whole lot of pain from various factors, but it does occur. Now, I wouldn’t say new, but a relatively recent symptom that has come to the forefront of our symptomatic management of these patients. They do experience a significant amount of pain and trying to find the right medication, because either they don’t have rheumatoid arthritis or fibromyalgia or something like that, it’s tough to get insurance approval for pain management for these patients. Sometimes the pain management provider to which they are referred to is at a loss because this isn’t well studied, and the etiology isn’t well elucidated in this population. That’s another aspect I find difficulty in treating adequately in this population.