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MyMSTeam members have many questions about multiple sclerosis (MS) and COVID-19. The complexity of MS and its many treatments can leave people with more uncertainties than answers. To get more information about staying safe from COVID-19 when you’re living with MS, MyMSTeam talked to Dr. Aaron Boster of The Boster Center for Multiple Sclerosis in Columbus, Ohio. Dr. Boster also has a YouTube channel covering many aspects of treating and living with MS.
Dr. Boster got right to the point: “You're not more or less likely to get the infection because you happen to have multiple sclerosis,” he said. Dr. Boster emphasized that people with MS must adopt healthy behaviors to decrease their risk of contracting COVID-19. The first step is to understand how the coronavirus is spread. You can contract COVID-19 when someone with the virus coughs, sneezes, or talks and the mist from their breath comes in contact with your mouth, nose, or eyes. It can also spread if you touch an object that has coronavirus on it and then touch your face — which people tend to do every minute or so.
“Social distancing is the number one tool,” Dr. Boster said. “And not just from people who are actively sick, but from people who may not yet show signs of infection or who are asymptomatic.” Avoiding contact with the coronavirus is the first line of defense, and the best way to do that is to stay at least 6 feet away from other people.
Dr. Boster also recommends wearing a mask. “If you have a mask on and somebody coughs or sneezes or breathes on you, it decreases the risk that the virus will get through,” he said.
After social distancing, the next step is to destroy any virus you may come in contact with. That means disinfecting surfaces and washing your hands. “We want people to wash their hands before they eat, after they go to the bathroom, after they sneeze or cough, and after they go outside. All that stuff your mom told you to do? Mom was right,” said Dr. Boster.
“The answer is actually no,” Dr. Boster said. “We don't believe that if you happen to have MS and you contract COVID-19, that you're going to have a more severe infection.”
There are factors which would predispose someone to having a more severe infection. “Being over 60 years of age is a risk factor for having a more severe course of COVID-19,” Dr. Boster said. “So is being a smoker, because it increases mortality by 14 times. If a person has diabetes, heart disease, lung disease, asthma, they're also in a higher category of risk.”
Having a suppressed white blood cell count, a side effect of some MS therapies, can potentially mean a more severe infection. Dr. Boster shared his still-evolving opinion about specific therapies for MS. He underscored that his thoughts are not medical advice and that MyMSTeam members should talk to their doctors about any concerns they have about their treatments.
“MS is a complex condition and treatment, and it must be customized for the individual,” Dr. Boster said. “To give you an example, take Gilenya, which functionally suppresses the immune system. My patients who are nonsmokers under 60 with no comorbidities, I've left them on Gilenya many times. Other patients who are older or have some risk factors, for some of them we've stopped Gilenya. Some of them, we've gone to every other day. It's an individualized kind of thing.”
The table below summarizes current medical thinking about taking various MS medications during the COVID-19 pandemic. Recommendations may vary by drug, by your personal circumstance, and even based on where you live. In some cases, your doctor will need to evaluate your absolute lymphocyte count (ALC), a measure of white blood cells, before making a recommendation.
|Drug Name||Generally considered safe to continue. Consult your doctor.||Evaluate your ALC with your physician to ensure it's safe to take your next dose.|
|Aubagio, Avonex, Betaseron, Copaxone, Extavia, Plegridy, Rebif||These modulate the immune response, but don't suppress it.|
|Tecfidera, Vumerity||About 20% of Tecfidera and Vumerity patients have an immunosuppressant response as a side effect. Check with your doctor that ALC levels are greater than .08.|
|Tysabri||It doesn't lower white blood cell count, but creates a barrier blocking white blood cells from entering the brain.|
|Lemtrada, Mavenclad||Talk to your doctor about timing. White blood cell count will fall after the first dose and then will build back up.|
|Gilenya, Mayzent||These functionally suppress immune response, and may increase risk to the upper respiratory tract.|
|Ocrevus, Rituxan||These lower white blood cell count, but only B cells. T cells fight the coronavirus. There may be increased risk, but it may not be as big as previously thought.|
Medical evidence is still coming on people taking disease-modifying therapies (DMTs) who have contracted COVD-19. “There was a recent paper that reported anecdotally that some folks on Ocrevus seemed to clear the virus, no problem,” Dr. Boster said. “That doesn’t mean every person is going to have an easy time, but I like hearing that.”
Members of MyMSTeam have reported their MS treatments are being delayed or postponed, and they want to know why. Dr. Boster said, “We have to think about the risk of untreated or undertreated MS and the risk of COVID-19. Take a 30-year-old who has no other risk factors, we might decide that the risk benefit favors treatment. Now take another MS patient, but make them 65 and give them diabetes. We can't control their age. We can't control that they have diabetes, but we can control when we give them the infusion. So in that patient, we might choose to wait a month.”
Dr. Boster believes there needs to be a risk benefit discussion for each individual living with MS. “We don't give people MS medicines because it's fun,” he said. “We give them medicines because MS is awful, and we need to control it.”
One important reason to keep people on their MS medications is to control flare-ups. Seeking medical treatment for an MS flare-up can risk greater exposure to the coronavirus. Dr. Boster explained, “Sometimes we can take care of flare-ups with oral steroids at home. Sometimes you need to come to infusion centers to get IV infusions. Sometimes you have to be admitted to the hospital. And the last two of those three options are not places where you want to hang out right now. Right?”
He emphasized that now is the time to be talking to your doctors. If your treatment for MS is postponed, have a conversation with your doctor about why and what the repercussions could be. There may be good reasons to defer treatment, and you should understand them, so you can avoid a potential rebound of the disease.
Steroid therapy also gets complicated by COVID-19. Dr. Boster recalled a patient who was suffering a bad flare-up with intense pain, serious brain fog, and difficulty swallowing. Working with the little data that’s available, Dr. Boster found that a short course of a high dose of steroids was less concerning than a very low dose of steroids for a long period of time. Together, they decided that the risk of taking steroids now was worthwhile, but there was another problem to be solved. Dr. Boster didn’t want to compound his patient’s risk by having her come to the infusion center. He prescribed high-dose pills, which she had to liquify to take safely with her swallowing problem.
Dr. Boster emphasized the benefit of forming a partnership with your doctor to work through the complications with each situation you may face at this time.
The first step is to talk to your neurologist, Dr. Boster said. “But I’m going to need their primary care doctor to be involved. We're going to talk about how you're going to be cared for, who is going to help you.”
The need for communication is particularly important because of the varied responses people with MS can have to COVID-19. “We don't want to send everyone to the ER or to the hospital,” Dr. Boster said. “If you're having shortness of breath and trouble breathing, we're probably going to send you to the hospital. If you're not short of breath and you can control your fever with an over-the-counter medication, we might instead choose to monitor you at home.”
The most important things you can do right now are to keep the lines of communication open with your doctors and take the same health precautions as everyone else: Social distance, wash your hands, and wear a mask.