Activity Forums Coronavirus (COVID-19) and Multiple Sclerosis

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    The Coronavirus, COVID-19

    There has been a lot of talk about the Coronavirus, COVID-19, over the past couple of weeks.
    A lot of the talk has been speculation by people that are not really qualified to talk about the subject. I have waited to write anything until I could find enough information from reputable resources. Unfortunately, even the reputable sources do not have a lot of information at this time because it is such a new outbreak and there just is not a lot of information about Multiple Sclerosis (MS) patients and this infection.
    The first thing to remember about the term “coronavirus” is this takes a lot of viruses in. The common cold is one example of a coronavirus. So coronavirus is a very ambiguous term. That is why the CDC, the press and virtually everyone else, is using the proper name, COVID-19, when referring to this particular virus.

    The Easy Stuff

    First are the common sense thing that you should already be doing to keep from getting a cold or the flu.

        • Wash your hands — frequently. If you are in a place where washing your hands frequently is not possible, then use hand sanitizers.
        • Avoid close contact with people who are sick
        • Stay home when sick, but be sure to consult a medical professional
        • Individuals should cover their mouth and nose with a tissue when coughing or sneezing, or use the inside of their arm to avoid spreading germs
        • Washing hands often helps to protect people from germs; if soap and water are not available, an alcohol-based hand rub should be used
        • Avoid touching the eyes, nose, or mouth – an illness may be spread when a person touches something that is contaminated with germs and then touches his or her eyes, nose, or mouth
        • Practice other good health habits, such as cleaning and disinfecting frequently touched surfaces at home, work, or school – especially when someone is ill; get plenty of sleep, be physically active, manage stress, drink plenty of fluids, and eat nutritious food

    DMDs and COVID-19

    Now I will qualify that statement. As always with medication, do not stop taking any meds without talking to your doctor. I cannot stress that enough.

    Copaxone (Glatiramer acetate),Aubagio (teriflunomide), Tecfidera (dimethyl fumarate), beta interferons, and Tysabri (natalizumab)

    Copaxone (Glatiramer acetate), Aubagio (teriflunomide), Tecfidera (dimethyl fumarate) and beta-interferons (various brand names) are not Immunosuppressants.
    If you’re taking Tysabri (natalizumab) call your physician and ask. There is not a lot of information about this drug. However, according to the Tysabri website one of the side effects is “Weakened immune system. TYSABRI may increase your risk of getting an unusual or serious infection.”
    So check with your physician before making any changes to your medication.

    Fingolimod (Gilenya)

    Fingolimod (Gilenya) may slightly increase your chances of viral infection, including COVID-19. However, if you’re already taking fingolimod, stopping can lead to rebound MS disease activity. This could outweigh the risks of COVID-19, especially if you are generally healthy.
    If you’re thinking about beginning a course of fingolimod soon, you and your neurologist could consider an alternative DMT until this pandemic is under control.

    Lemtrada (Alemtuzumab) and Mavenclad  (cladribine)

    If you’re taking a course of Lemtrada (alemtuzumab), or Mavenclad (cladribine), you and your neurologist should consider delaying it. The risk of getting a viral infection are slightly increased.
    If you’re scheduled for a second or third course of treatment of one of these DMTs, waiting may be a good option. The chances of progression of MS is very low if you have a delay of a few months in your treatment.
    Before canceling a course of treatment it’s important you first discuss it with your neurologist or MS team. It may be that once you understand the risks you want to continue, or there might be an alternative DMT you can take for the time being.

    Ocrevus (Ocrelizumab)

    Ocrevus (Ocrelizumab) is a highly effective treatment for MS but can also moderately increase your risk of viral infection. You and your neurologist may want to consider delaying this treatment as well.
    According to the Genentech website:

            • COVID-19 UPDATE: We understand those living with multiple sclerosis (MS) and their loved ones may be facing a high level of uncertainty during this serious health situation. Patient safety is Genentech’s highest priority. As a company, we are taking COVID-19 seriously and are committed to keeping the communities we serve updated with any new information we learn that could help inform health decisions related to our medicines. We believe that treatment decisions are personal and should be made between patients and their healthcare teams so please reach out to your neurologist or medical professional with questions. In addition to local Public Health guidance, or local guidance specifically issued by medical or patient associations, more information about COVID-19 can be found on the Centers for Disease Control’s (CDC) website or the World Health Organization’s website.

    Mayzent (Siponimod), Arzerra (Ofatumumab) and rituximab

    If you are taking Mayzent (Siponimod), Arzerra (ofatumumab) and rituximab (various brand names) these drugs could affect your risk of getting COVID-19. All of these drugs can affect your immune system.

    Latest Information as of Now

    This is the latest information that I have as of right now, 03.14.2020 at approximately 5 p.m.
    The information about both the virus itself and how it is growing in the United States is changing quickly.
    But if you follow the steps that were outlined above, then you should be fine. However, if you have been around someone that later tests positive then there are some things that you should be aware of. First and foremost, let your care team know. I am lucky in that both my Primary Care Provider and my Neurologist are affiliated with the University of Florida. So they each have access to any notes on my file. If you do not have the same setup that I have, make sure that every doctor you have knows what is going on. I have been in situations where I had several doctors on several different affiliations. I made sure that each doctor knows everything that the others are doing. This is a good practice anyway.
    Do not keep following the news 24 hours a day. Getting too much of the same thing being repeated over and over is never good. Watch the news a couple of times a day for any new information coming out.

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