Now, due to the COVID-19 pandemic and the additional host of unknowns that have come with it, that feeling of uncertainty has likely gone to a new level for many people living with MS. Here’s what we know so far about how the coronavirus impacts MS — and what you can do to stay as healthy as possible during the pandemic.
Does Having MS Put You at a Higher Risk of Contracting COVID-19?
“Our initial sense from early in the pandemic has been confirmed: People with MS do not appear to be at a higher risk of contracting COVID-19 and are not at a higher risk of having a more severe course of COVID-19,” says Robert Fox, MD, a neurologist at the Mellen Center for Multiple Sclerosis at Cleveland Clinic in Ohio. The majority of MS patients actively treated with a disease-modifying therapy (DMT) had mild disease when they contracted COVID-19, according to a study published in October 2021 in Multiple Sclerosis and Related Disorders. People with MS who also had risk factors that have been identified in the general population, including being older, having multiple comorbid conditions, and being dependent on a wheelchair for mobility were found to be at a higher risk of more severe disease and death, says Dr. Fox. “This makes sense,” says Fox, “because we would expect people who have these conditions in the MS community to be just as susceptible to a worse outcome due to the same factors as the rest of the population as a whole. People who are wheelchair-bound or bed-bound have a harder time with respiratory infections in general. It’s more difficult for them to cough and clear respiratory secretions.” The study also found that anti-CD20 therapy use was associated with a higher risk of more severe COVID-19, intensive care admission, and in-hospital death. Anti-CD20 monoclonal antibody therapy depletes a type of immune B cell that is believed to cause the nervous system damage that occurs in MS. (More on that later.) Researchers continue to gather data about COVID-19 and MS with the COViMS registry, a collaboration between the National Multiple Sclerosis Society, the Consortium of Multiple Sclerosis Centers, and the Multiple Sclerosis Society of Canada. The registry captures information on the outcomes of people with MS in North America who have developed COVID-19, says Fox. This voluntary registry has a live data feed that includes a summary of all the patients, their status, and what MS therapies they were taking when they got COVID-19. Anecdotally, Dr. Fox has seen some longer-term effects on his patients who already had some impairment due to MS. “If these people had a pretty severe course of COVID-19 that required hospitalization or some rehabilitation to help with the recovery from the neurologic impairment due to COVID, when they finally get past the acute phase of COVID-19, they seem to not quite get back to the level they were at before the COVID-19 infection,” he says. On the other hand, it’s not that uncommon for people to become deconditioned due to an acute illness, whether that be from severe pneumonia, a hip fracture, or a heart attack, and then recover to a lower level compared to where they were before, says Fox. “It’s difficult to know what is specific to COVID and what is related to the deconditioning of their overall neurologic function. That’s an area that we still need to look into,” he says.
What Do We Know About MS And Long COVID?
Long COVID is a condition in which new or ongoing symptoms last for weeks or months after a COVID-19 infection. It can develop even in people who were only mildly ill with the initial infection. Many of the symptoms of long COVID overlap with MS symptoms, according to Fox. Common MS symptoms such as fatigue, memory or concentration problems, and joint or muscle pain are also among the symptoms of long COVID, according to the Centers for Disease Control and Prevention (CDC). “For example, we know MS patients have fatigue, and we know that, as the disease evolves, fatigue can become more severe for our patients, and we also know that fatigue is a significant symptom of long COVID,” says Fox. In a case like that, it’s difficult to know what the underlying cause is — it could be due to the lingering effects of COVID or the MS, he says. “It’s going to be difficult to separate that out, but it is being studied,” says Fox.
How Will Your MS Be Affected if Your Caregiver or Support Person Tests Positive for COVID-19?
For people with more advanced MS who require a caregiver, COVID-19 has brought the need to have a backup plan to the forefront, says Fox. “The pandemic aside, this is something that we should be discussing, because there are many medical issues that could render a caregiver unable to provide support,” he says. “If you haven’t already, talk with your support system and your healthcare team about what your ‘plan B’ is if your caregiver is out of commission for a period of time,” he says.
Are There Changes to Formal MS Treatment Guidelines to Follow?
A variety of medical organizations have made recommendations about MS therapies and whether patients should hold, change, or extend the dosing interval of their medications, says Fox. The National Multiple Sclerosis Society recommendations include the following guidelines:
People with MS currently taking disease-modifying therapies (DMTs) should continue with their treatment.People who develop symptoms of COVID-19 or test positive for the infection should discuss their MS therapies with their healthcare provider.Before starting any new DMT, the risk of COVID-19 and the individual’s MS disease course should be considered.Interferons such as Avonex and Rebif (interferon beta-1a), Betaseron and Extavia (interferon beta-1b), and Plegridy (peginterferon beta-1a), as well as the drug Copaxone (glatiramer acetate injection), are not likely to make the course of COVID-19 more severe. There is some preliminary evidence that interferons may reduce the need for hospitalization due to COVID-19.Current evidence suggests that people with MS taking Tecfidera (dimethyl fumarate), Vumerity (diroximel fumarate), Aubagio (teriflunomide), Gilenya (fingolimod), Tysabri (natalizumab), Zeposia (ozanimod), and Mayzent (siponimod) do not have an increased risk of more severe COVID-19 symptoms.There is some evidence that people who are on therapies that target CD20 — Ocrevus (ocrelizumab) and Rituxan (rituximab) — are at a higher risk of having a more severe form of COVID-19, says Fox. “That has been confirmed as more data has come in. It is also presumed that a new drug on the market, Kesimpta (ofatumumab), has the same risk.”Researchers are still collecting information to find out if there are additional risks associated with the use of Lemtrada (alemtuzumab) and Mavenclad (cladribine) during the COVID-19 pandemic. Discuss your individual risks and living situation with your care provider.Recommendations on delaying second or further doses of alemtuzumab, cladribine, ocrelizumab, and rituximab due to the COVID-19 outbreak differ between countries. If you are taking one of those medications and are due for the next dose, you should talk with your doctor about the risks and benefits of postponing treatment. Don’t stop treatment without talking with your provider first.
RELATED: 8 Answers to Your Questions About Omicron Sometimes that’s confusing to patients, because steroids can be used as a treatment for COVID-19, he says. “It is true that when managing COVID, sometimes we use steroids to decrease the immune response when it’s fighting COVID, but that’s after the infection has established itself,” Fox says. Because of that risk of a more severe course, providers are a little more hesitant to treat a relapse of MS with steroids if they don’t think that steroids are totally necessary, says Fox. “We’ll still use them if we think they are necessary, but if we do that, we’ll tell our patients to ‘double down’ on their precautions to avoid catching COVID,” he says. Besides the therapies that target CD20, other MS therapies, although they modify the immune response, don’t seem to predispose people to a more severe COVID-19 course, says Fox. “That’s very encouraging to the rest of our patients who are on a wide variety of other immune-modulating therapies, where there is some concern that it might hurt their ability to fight COVID if they are exposed to it. As best as we can tell, the answer to that is no,” he says. “When we look at the disease course in patients who are on those other therapies, the course doesn’t seem any more severe than in patients who aren’t on those therapies at all,” he adds.
How Certain MS Therapies May Impact the Immune Response of the COVID-19 Vaccine
The new question experts are investigating has to do with vaccines, says Fox. “Is there reduced protection from COVID-19 vaccines in patients who are taking different MS therapies? The jury is still out,” he says. It has been established that patients who are taking the anti-CD20 monoclonal antibodies and the S1P modulators — things such as Gilenya (fingolimod) and Mayzent (siponimod) — produce less antibodies, meaning they are less likely to the produce a level of antibodies that is considered sufficient following vaccination, says Fox. “Now, what we don’t know yet — and this is where registries [such as CoviMS] are turning their focus: Does that then reduce the benefit of the vaccines?” he says. In addition to an antibody response, the COVID-19 vaccines also work through the creation of white blood cells by the immune system, he points out. “This is just as important or perhaps even more important than the antibody response to a vaccine. So it’s still an unanswered question, whether a reduced antibody response means that the vaccine is less protective,” he says. Whether the booster dose can improve the antibody response is also something that is still being investigated, says Fox. Researchers are studying the available data to find out if people with MS who are taking the therapies mentioned above are getting COVID-19 more often than the people who are getting vaccinated who are on other MS therapies, and if they are having a more severe course of COVID-19, says Fox. “We think the COVID-19 vaccines are the way out of this pandemic, and if these drugs are reducing the protective benefits, that’s a very important thing for us to know as we counsel our patients,” he says.
Are There Extra Safety Precautions People With MS Should Take to Avoid Exposure?
“I reiterate the CDC COVID-19 prevention recommendations — which include getting vaccinated, wearing a mask in indoor public places, staying six feet away from other people, avoiding crowds, getting tested before joining an indoor gathering, washing your hands frequently, and monitoring any symptoms you develop that could be caused by COVID-19 — with my patients, and I tell them that they really want to avoid this disease if at all possible,” says Fox. “Some of the vaccines may have a reduced response in some patients, but we don’t think the vaccines are unsafe — just maybe a little less effective than we would want them to be,” says Fox. “You should still get the COVID-19 vaccines, the flu shot, and the shingles vaccine if that is recommended for you,” he says. If you’re on a medication that may give you a reduced immune response to COVID, continue to take appropriate steps to protect yourself from COVID-19, says Fox. “There are many events where masks are becoming less common, but I tell my patients to keep wearing their masks at public places — events or shopping — and maintain social distancing.”
What Resources Are Available if You Can No Longer Afford Your Medications?
If you lose your health insurance or your insurance changes, there are actions you can take to make sure that your therapy isn’t disrupted, says Fox.
If the copayment required by your insurance is no longer affordable, explore copay assistance. Copay assistance is usually in the form of a copay card, provided by the drug’s maker, which is essentially a coupon that reduces your out-of-pocket costs. Your doctor or pharmacist may know if such a card exists for the drugs you take.Enroll in a patient assistance program that is sponsored by the pharmaceutical company that manufactures the drug. The National Multiple Sclerosis Society has a resource page that lists various assistance programs.Talk with your doctor to see if there are any alternative therapies that could be less expensive.
RELATED: A Guide to Medical Assistance Programs and Resources
What Can Someone With MS Take to Safely Boost Their Immune System?
“Keep in mind that MS is a disorder where the immune system is too strong; it gets confused, and it attacks the brain and the spinal cord. To treat MS, we try to reduce the immune system in a selective way so that it doesn’t harm the brain anymore but still fights off infections and things that we don’t want to have invading our body,” Fox says. That being said, there is evidence that vitamin D is helpful, says Fox. “I recommend taking ample vitamin D supplements,” he says. However, this may be easier said than done, as people with MS tend to have more insight and give more attention to physical symptoms they may have — like pain, walking problems, and bladder problems — while paying less attention to their mood, says Fox. “Care providers can be helpful in this area. Allow the people who are close to you to give feedback as to how your mood is doing, and empower them to support you by encouraging adherence in medicines or counseling,” he says.
Can Stress or Anxiety About the Coronavirus Make MS Worse?
“I don’t know of a single medical condition that is not adversely affected by stress, and there is evidence that stress can worsen the symptoms and the disease of MS,” says Fox. Research published in the journal Psychological Medicine about the effects of stress on MS suggests that negative stressful events are associated with the development of new brain lesions. “Patients can dismiss stress, but it’s another condition like high blood pressure or diabetes or obesity; it can impact all aspects of your health, and it should be attended to,” he says. One of the few upsides of the pandemic is that there are more options and fewer regulations concerning virtual behavioral health or mental health services delivered via telemedicine, says Fox. “That can make it easier and safer for people who need this care to get it,” he says.
Should You Continue to Go to Regularly Scheduled Doctor’s Appointments?
“I believe that, in general, healthcare systems have taken very effective steps to prevent transmission of COVID-19 and other infections, like influenza. I think it is very safe for patients to get care, especially their outpatient care, where interactions tend to be brief,” says Fox. “It is helpful for us to see patients in person to examine them and assess their disability; there is a better interaction and assessment compared with a virtual visit,” he says. That’s not say there aren’t advantages of virtual visits, says Fox. “It can be more convenient and can allow for extra check-ins to make sure everything is going well,” he says. Moving forward, healthcare will probably involve a mix of both virtual and in-person visits, “hopefully leveraging the strengths and benefits of both types of visits,” says Fox. It’s a good thing to stay up-to-date on health news and research that may impact your MS and overall health, but it shouldn’t replace your direct interactions with your provider, he says. “Together, you can determine how all this information can be used to find the best path forward for your specific situation,” he says. Don’t let fear of catching COVID-19 keep you from getting the care you need, says Fox. “Many people are dying as a result of staying home during serious medical emergencies such as stroke and heart attack, because people are trying to avoid the hospital and COVID-19. COVID-19 is important, but other health issues and screenings are important, too. Many lives are being lost due to the lack of attention to these other areas of health,” Fox says.
