What are the most common adverse events and disabilities you see in MS patients? Could you walk us through how you would mitigate and manage each of these challenges?
Mrs. Marks: One of the common presenting symptoms in a patient with multiple sclerosis, particularly among the adult population, is loss of vision or visual disturbances. A lot of patients develop lesions on the optic nerve, which means that the demyelinating event occurred on the optic nerve so there’s damage to that nerve and they present with visual disturbances like double vision or loss of vision on one side. It’s important to get ophthalmology involved with these patients to see if there is any way they can possibly either develop treatment plans that are gong restore some of the patients’ vision or if they’re going to need assistive devices what type of assistive devices they’re going to need. They’ll also work with occupational therapy in the hospital to figure out how to maneuver and live with these assistive devices they might need to employ after the visual disturbances.
Immunosuppressive therapy though is going to be our golden standard along with ant-inflammatory agents like corticosteroids for medical management. However, depending on the type of multiple sclerosis, whether or not it’s remitting, relapsing or if it’s a progressive we don’t know how much of that vision loss we’ll be able to recover, so comprehensive care needs to be employed and we have to make sure that the patient can live with whatever disability they’ve now acquired.
Another quite disturbing reality of nerve damage can be dysfunction in bladder or bowel, which means the patient…the nerves that innervate the bladder and bowel and control the sphincters that would render someone continent are now damaged. And so, especially in a young adult, this can be devastating. And we have to have the conversation about sexual habits and sexual function as well because that can be a concern. Basically, the neurology team would be involved in assessing to what extent the bladder and bowel have been affected and we would place patients on a bowel, bladder regiment, which means to retrain them on how to regain some of that function and that would start immediately as the problem was identified, and again an injunctive therapy with the immunosuppressive and corticosteroid treatments. A lot of patients still, after presenting with that initial bowel and bladder dysfunction after enough therapy is involved and after medical management, they regain full continence, so that’s a good sign.
Last but not least, one of the major complications or adverse events that happen with multiple sclerosis, not necessarily from the disease process itself but from the treatment is the severe immunosuppression that a patient experiences. You can well imagine that any patient that’s going to be on disease-modifying agents, or chemotherapy drugs, basically, are going to have severe immunosuppression, which leaves them open to infections of all kinds. A lot of these patients are placed on reverse isolation precautions, which means that the family has to be educated on not exposing them inadvertently to public gatherings or if they’re coming to visit the patient to be very careful with handwashing and hand hygiene. The patient themselves has to be educated on the fact that their immune system is not as strong as everyone else’s so they have to very, very careful with common colds or being around family members with any infection because they’re not going to have the defense mechanism to fight it off. So those are some of the complications associated with the disease and treatment.
What are some principles you would use for dose modification in MS patients?
Mrs. Marks: Treatment plans for multiple sclerosis are dependent upon the patients’ response, so if we’re using corticosteroid therapy, which is the initial therapy you place patients on after their initial diagnosis, and the patient is responding well to just the high dose steroids and are showing signs of improvement with no relapse then that’s going to be enough for the time being. We want to treat also other symptoms, so for example, as I mentioned before, the bladder and bowel incontinence, if patients are having problems with that, there’s medications we can place them on to help control sphincter control and to minimize the incidents of incontinence events. For the disease-modifying agents we have to consider cost. A lot of times these drugs are very expensive and there could be some difficulty in getting approval for the therapy so based on the patients’ financial status, insurance coverage, we make a plan that’s suitable for them.
There’s some experimental drugs out there that are not on the general market, they haven’t been FDA approved, but again, that would have to be a conversation with the patient, and family, to determine whether or not this would be the right option, but the main state is to go with how well the patient’s responding to current therapy. If the response is good there’s no need to add a new agent or increase doses. Sometimes does reduction can take place if the patient is having an adverse reaction, like an allergic reaction. There are some young patients who develop a rash after the third treatment. Sometimes you don’t see that immediately and you have to watch out for that. In that case, you would replace with another agent and see how the patient tolerates it. The other thing that might affect your dosage is also, again, immunosuppression. If the patient develops a superinfection that’s attacking the system and they become septic definitely you’re going to have to pull back on your immunosuppressive therapy while providing enough support to also fight the infection that they’re now having.
The drawback with that is going to be that their multiple sclerosis symptomology will flare up, so again, treating the patient as an individual and looking at how they respond to the therapies is what’s going to determine what you provide. An important thing though is not to stop therapy if the patient seems to be getting better because it’s the therapy that’s making that happen, and I think part of that too ties into education to the family and the patient to say, hey I know you’re feeling good but we have to continue this therapy because that’s what’s making you feel good right now.
How does a patient who develops PML present? How do you manage such patients?
Mrs. Marks: PML is a complication that results from the immunosuppressive therapy that a patient with multiple sclerosis is on, and it’s a type of encephalopathy that occurs, based on superinfection, from a virus that up to, in some studies, 70% of the population actually lives with. It lives dormant in our body and a person with normal immune systems don’t have any symptomatology from the virus. However, someone who’s immunosuppressed, such as someone with multiple sclerosis who’s on medication that’s going to severely depress the immune response might develop an infection from this virus, which invades the central nervous system.
After it invades the central nervous system there’s severe inflammation in the brain, hence the term encephalopathy. These patients present extremely lethargic, they have frontal lobe syndrome, which means they have cognitive and behavioral changes, and when you look at their labs you’ll see that they’re extremely immunosuppressed, basically, they present like a septic patient, someone with a superinfection.
This is a very dangerous state to be in and the challenge is that with the multiple sclerosis patient you have to stop the immunosuppressive therapy until you can get this virus under control. The way they diagnose is by MRI and CT scan looking at the brain to see if there are any encephalopathic changes, and then ultimately, possibly, a lumbar puncture for detection of the virus, and in some cases brain biopsy. Unfortunately, patients who develop this complication have a high rate of morbidity. It’s usually seen in patients with progressive MS who are on long-term immunosuppressive and disease-modifying therapy. Like I said before, the treatment would be to stop the immunosuppressive drugs but then you’re going to have a return of the MS symptoms, so it’s a catch 22.
Are there holistic recommendations that you make to MS patients that can improve their quality of life?
Mrs. Marks: Holistic therapy is something that the patient, as well as the provider, need to sit down and discuss fully because there’s a lot of mixed information out there, and a lot of it sometimes is not scientifically based, and we have to be careful as medical providers not to encourage things that there’s no scientific evidence to support. However, there are some things that have shown to give multiple sclerosis patients some relief and don’t show any evidence of damaging them otherwise.
I think we’ve all heard of gingko biloba, which is an herbal drug that helps memory and cognitive function. Some multiple sclerosis patients have reported that this has been helpful to them and there’s no studies to show that it’s been damaging in any way. Again, holistic therapy should not be in lieu of medical treatment but can be used as adjuvant therapies along with the immunosuppressive agents, such as corticosteroids.
Vitamin D, though, has been linked to…an increased level of vitamin D has been linked to an increased incidence of multiple sclerosis, so the evidence…because there are scientific studies that show that correlation you would want to inform your patient of that and advise them against taking extra vitamin D supplements because the relationship with incidents of multiple sclerosis is unknown and the correlation studies have shown that there’s an association between increased levels of vitamin D in the blood and the incidence of MS. Another thing that seems to be beneficial is increased intake of antioxidants. Antioxidant therapy usually helps with neuropathy and nerve function, so things like green tea might be helpful to the patient, and so you could encourage that as well, but the most important thing is for the patient to always be informing their provider as to whatever supplements they’re taking or whatever holistic therapies they’re seeking so that we are able to coordinate our end of the care as well.