What to Know About Multiple Sclerosis and COVID-19
Article By: Colleen Doherty, MD
Article By: Colleen Doherty, MD
Multiple sclerosis (MS) is an autoimmune disease that occurs when a person's immune system misguidedly attacks the protective covering of nerve cells in their brain, spinal cord, or eyes.
While ongoing research suggests that simply having MS does not increase your risk of becoming infected with the coronavirus leading to COVID-19, certain individual factors—like taking steroids for an MS relapse or having progressive MS, for example—may increase your chances of getting a severe case if you do develop COVID-19.
To optimize the health and safety of those living with MS, experts are encouraging patients to get the COVID-19 vaccine as soon as possible. Experts also recommend that patients with MS continue taking their disease-modifying therapy (DMT) as usual unless instructed otherwise by their physician.
MS and COVID-19 Risk
Current evidence shows that having MS does not increase your risk of becoming infected with the coronavirus that leads to COVID-19. That said, some patients with MS seem to be more vulnerable to becoming severely ill if they do come down with COVID-19. These groups of patients include:
Those with primary or secondary progressive MS
Those with MS who are over the age of 60
Men with MS1
Black people with MS and, possibly, South Asian people with MS1
Those with higher levels of MS-related disability (for example, a person who has difficulty walking without the use of a mobility assistive device or one who has an expanded disability status scale score, or EDSS score, of 6 or higher)
Those with MS who are obese3
Those with MS who smoke or have diabetes, heart disease, or hypertension
Those who recently took steroids or who are taking certain MS disease-modifying medications (see more below)4
There are also people living with MS who are more likely to become exposed to the coronavirus, including:
Patients living with advanced MS in a long-term care facility, especially a facility with a large number of beds and high occupancy rates5
People receiving an intravenous (through your vein) MS disease-modifying medication at a hospital or infusion center6
Those who require periodic laboratory monitoring (e.g., a monthly test to check the levels of white blood cells in their bloodstream)
Complications of MS and COVID-19
In addition to the fact that certain MS populations are more likely to develop a severe COVID-19 course (including being hospitalized, placed on a ventilator, and/or dying), there are other unique challenges to consider regarding having MS and developing COVID-19.
For one, contracting a viral infection like the coronavirus can trigger an MS relapse, or exacerbation.7 In this instance, besides the symptoms of COVID-19 (e.g., fever, dry cough, and shortness of breath), a person may experience new neurological symptoms or worsening of their existing ones.
Common symptoms that may occur during an MS exacerbation include:
Eye pain with vision problems (optic neuritis)
Dizziness or vertigo
Numbness or weakness
Muscle stiffness and spasm
Bladder or bowel problems
Infection with the coronavirus (and other viruses) may trigger a pseudoexacerbation, or false exacerbation, especially if a fever is present.
With a pseudoexacerbation, a person may experience a temporary worsening of their MS symptoms, even though there is no damage or inflammation occurring within their central nervous system. Pseudoexacerbations generally improve within 24 hours of the illness and/or fever resolving.
One case study suggests that infection with COVID-19 may increase the risk of developing multiple sclerosis or unmask this underlying neurological disease.
Finally, while there is no direct evidence linking MS and being a COVID-19 "long hauler" (someone who experiences long-term effects), it may be hard to delineate between the two, as they share common symptoms. Shared symptoms of COVID-19 long-haulers and people with MS include:
MS Treatments and COVID-19
The vast majority of patients diagnosed with MS take a disease-modifying therapy (DMT).
With the emergence of the COVID-19 pandemic, patients have understandably questioned whether taking their DMT negatively impacts their risk of getting coronavirus (and developing a severe case of COVID-19, if they do get it).
The DMT dilemma—mainly whether to temporarily stop taking the drug during the pandemic—stems from the fact that DMTs generally work by suppressing a person's overactive immune system. Therefore, taking a DMT may theoretically affect a person's ability to fight the coronavirus effectively and robustly.
That said, stopping or delaying treatment with a DMT carries its own risks, specifically by increasing a person's chances of having an MS relapse and/or speeding up the progression of their disease.
There is also the paradoxical thought process that certain DMTs may actually have a protective effect against COVID-19 by altering the hyperactive inflammatory response associated with severe cases of COVID-19.
What the Experts Say
Experts from the National MS Society recommend that patients continue taking their current DMT unless instructed otherwise by their doctor.11 Moreover, all patients should carefully review with their own neurologist all of the potential risks and benefits of taking their DMT during the COVID-19 pandemic.
For certain DMTs, your doctor may recommend specific strategies during the COVID-19 pandemic. For example, some DMTs lower your absolute lymphocyte count (ALC). If your ALC gets too low (a sign that your immune system is very suppressed), you may be more susceptible to a coronavirus infection.
It's also important to consider these specific scenarios when it comes to treating your MS.
Active COVID-19 Infection
If you develop symptoms of COVID-19 or test positive for the virus, it's important to contact your doctor right away to review the next steps. With many DMTs, it's likely that you will be able to safely continue the drug, especially if you have no symptoms or only mild symptoms.
If your symptoms are moderate or severe, though, your doctor may recommend skipping one or more doses. Likewise, your doctor may ask for frequent check-ins (perhaps through telehealth visits) and/or blood tests to see how strong your immune system is.
Newly Diagnosed with MS
If you are newly diagnosed with MS during the COVID-19 pandemic, you can most likely start taking a DMT. That said, your neurologist will probably avoid certain ones like Lemtrada (alemtuzumab) and Mavenclad (cladribine), as they are stronger immunosuppressants.
If you think you may be experiencing an MS exacerbation, contact your doctor right away. They may ask to see you in person or through a telehealth visit.
While steroids are commonly used to treat MS relapses, taking high doses may increase your risk of having a severe COVID-19 reaction.4 If you do require steroids, your doctor may have you isolate for at least a month to lower your chances of contracting the virus.
Frequently Asked Questions
There are a lot of questions when it comes to the COVID-19 pandemic. Below are answers to a few common questions that those living with MS may have.
Should I get a COVID-19 vaccine if I have MS?
According to the National MS Society, people with MS should get vaccinated. This is because even though specific data on the use of the COVID-19 vaccine in people with MS is still not available, science has revealed that the COVID-19 vaccine is overall safe and effective.
As you would with any medical decision, be sure to carefully discuss getting the COVID-19 vaccine with your personal physician.
If you are worried about the potential risks of getting vaccinated, keep in mind that none of the vaccines contains the live coronavirus, so they cannot cause a viral infection. Moreover, experts believe that the vaccines are unlikely to trigger an MS relapse or negatively affect the progression of your disease in the long run.
Will the COVID-19 vaccine be effective if I'm taking a DMT?
Scientific data has found that some DMTs may make the COVID-19 vaccine less effective (although you still will obtain some protection).
These DMTs include;
If you are taking one of the above DMTs, your doctor may coordinate the timing of your vaccine with the timing of your next DMT dose to optimize the effectiveness of the vaccine.
Having said that, some doctors will still prefer that you get the COVID-19 vaccine as soon as possible rather than waiting to time it around your DMT dosing schedule.
Can I continue seeing my doctor in person during the COVID-19 pandemic?
Your doctor may recommend telehealth visits for you during the pandemic to reduce your chances of being exposed to the coronavirus. In-person visits are generally reserved for people experiencing a significant change in their MS symptoms or for those who are newly diagnosed.
Remember that healthcare visits during the COVID-19 pandemic go beyond your neurology appointments. It's important also to continue seeing your mental health professional or rehabilitation therapist (e.g., physical or occupational therapist). These visits can often be accomplished virtually, as well.
Is there ongoing research on the effects of COVID-19 on people with MS?
Yes, research on the links between MS and COVID-19 is being actively pursued. In fact, the National MS Society, Consortium of MS Centers, and Multiple Sclerosis Society of Canada have banded together to develop a registry of people with MS and other CNS demyelinating diseases who have contracted COVID-19.
This registry called COViMS (COVID-19 Infections in MS & Related Diseases) will help determine whether patients with MS face special risks associated with coronavirus.
The National MS Society is also partnering with the iConquerMS Patient-Powered Research Network to collect data on how well people with MS tolerate the COVID-19 vaccine.
How to Stay Safe
To prevent yourself and others from developing COVID-19, it's important to engage in these habits (whether you have MS or not):
Practice social distancing by staying at least six feet apart from others you don't live with.
Wear a mask and do so properly (ensure that it covers your mouth and nose).
Avoid crowded and/or poorly ventilated places, especially those that are indoors.
Wash your hands with soap and warm water frequently throughout the day. Use an alcohol-based hand sanitizer if soap and water are not available.
For high-risk patients with MS (e.g., older individuals with MS or those with underlying diabetes or heart disease), the National MS Society also recommends the following:
Avoid touching your eyes, nose, and mouth unless your hands are clean.
Cover your mouth and nose with a tissue or use the crook of your arm when coughing or sneezing.
Clean household/work surfaces frequently, especially those that are regularly touched (e.g., kitchen table or desk).
Utilize telehealth services, if possible, but do not avoid in-person visits if your doctor deems them necessary for you to receive optimal care.
Engage in physical and pleasurable activities, especially those that are outside, and adhere to social distancing guidelines. These activities are essential to maintaining your mental and emotional health and well-being during this trying pandemic.
Get the seasonal flu vaccine.
Lastly, be sure to periodically review your treatment plan with your physician. In some cases, temporarily switching to a different DMT or delaying a dosing interval for an intravenous drug (to avoid unnecessary exposure) may be a reasonable strategy.