Guidelines for DMT Use as COVID-19 Spreads

Guidelines for DMT Use as COVID-19 Spreads
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People with multiple sclerosis have unique concerns about the new coronavirus and the COVID-19 disease that it causes. Many of us use disease-modifying therapies (DMTs) that suppress our immune systems and give us an extra element to worry about when we plan our defense against this virus.

To help us make wise decisions, the U.K.’s MS Trust and the Italian Society of Neurology have created COVID-19 guidelines related to DMTs, and both organizations’ recommendations are similar. They balance concerns of abruptly ending any MS treatment with those of possibly being more susceptible to this illness because some DMTs suppress the immune system.

Italian guidelines

According to BartsMS Blog, the Italian neurologists wrote that “Given the lack of knowledge or data on the COVID-19 disease course in MS patients receiving DMTs, at present there is no recommendation to stop the different DMTs and therefore expose MS patients to the risk of MS exacerbations. We, therefore, recommend continuing the current DMT specifically with [the following possible modifications]”:

DMTs that can be prescribed and used as usual:

DMTs whose start or continuation might be delayed, based upon individual circumstances:

A full translation of the Italian guidance by neurology professor Gavin Giovannoni can be found here.

UK guidelines

The MS Trust adds to its guidance Mayzent (siponimod) and Arzerra (ofatumumab), which are available by private prescription in the U.K. According to the Trust, using these DMTs “could also affect your risk regarding COVID-19 and should be discussed with your neurologist or healthcare professional.”

It also cautions that Gilenya (fingolimod) “may increase your chances of having more severe viral and other infections, including COVID-19. However, if you are already taking fingolimod, stopping can lead to rebound MS disease activity, which in many cases would outweigh the risks of the virus. If you are considering beginning a course of fingolimod in the near future, you and your neurologist could consider an alternative DMT for the time being.”

Finally, it adds that “Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. This treatment greatly hampers your immune system for a period of time and you and your neurologist or healthcare professional should consider delaying this treatment.”

Other national guidelines

The National MS Society in the U.S. is much less specific about DMTs, saying only: “People with MS should continue disease-modifying therapies (DMTs) and discuss specific risks with their MS healthcare provider prior to stopping a DMT.” Neither MS Australia nor the European Multiple Sclerosis Platform offers any DMT-specific guidance.

To cruise or not to cruise

My wife and I were planning to join our son and his family on a short cruise at the end of April. Two days ago we were still considering making this trip. Even though I’m 71 and have been treated with Lemtrada, I thought that with proper precautions the risks would be minimal.

However, Dr. Anthony Fauci, the top infectious disease expert in the U.S., says that elderly people shouldn’t take a cruise. Period. Dr. Fauci is a man whom I reported on for many years when I worked as a journalist — I highly respect his judgment and knowledge.

Additionally, the U.S. Centers for Disease Control and Prevention has issued guidance recommending that “travelers, particularly those with underlying health issues, defer all cruise ship travel worldwide.” The U.S. State Department has issued the same message. Former Food and Drug Administration head Scott Gottlieb says that “Everyone over 60 should become a hermit for a month.”

Since then, things have become even more serious.

So, no cruise with the grandkids this year. We’re postponing it until 2021. Let’s all hope we’re out of the coronavirus woods by then. Let’s hope that a vaccine for this coronavirus has been developed. Let’s also hope that people who think that vaccines harm, rather than help, will see the light and get themselves and their children vaccinated for influenza, measles, and other diseases for which prevention is available. Let’s do what we can to hold the line on all infectious diseases.

You’re invited to visit my personal blog at www.themswire.com.

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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.
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Diagnosed with MS at age 32 in 1980, Ed has written the “MS Wire” column for Multiple Sclerosis News Today since August 2016. He presents timely information on MS, blended with personal experiences. Before retiring from full-time work in 2012, Tobias spent more than four decades in broadcast and on-line newsrooms as a manager, reporter, and radio news anchor. He’s won several national broadcast awards. As an MS patient communicator, Ed consults with healthcare and social media companies. He’s the author of “We’re Not Drunk, We Have MS: A tool kit for people living with multiple sclerosis.” Ed and his wife split time between the Washington, D.C. suburbs and Florida’s Gulf Coast.

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14 comments

  1. Ruth Hoham says:

    Ed –

    Very helpful info – I received a similar rundown from Swedish MS Center (Seattle) yesterday.
    Also this: “Having multiple sclerosis would not increase the risk of coronavirus disease (COVID19) in most patients. People with MS generally have more robust immune systems, so robust that the immune system attacks their nervous system, causing the MS. The disease, MS, does not cause suppression of the immune system.“

  2. J Howell says:

    That makes some sense, until you factor in the DMTs suppressing that robust immune system.

    I’m doing my best to strike a balance between being overly worried and sensible about the whole thing. I hope we all make it through this as well as can be.

    • Ed Tobias says:

      Thanks for the comment, Mr. H.

      Some DMTs suppress the immune system, others don’t. Some suppress it longer than others. For example, with a treatment every 6 months, Ocrevus continues to supprress it. On the other hand, after Lemtrada treatments end the immune system is supposed to return to normal, though the time required for it to do that can vary from person to person.

      Thus…the different recommendations for different DMTs. And, I wouldn’t be surprised if these change as scientists learn more about this virus.

      Ed

  3. Dave says:

    Interestingly, a lot of reports seem to be suggesting that it is an extreme immune over reaction that causes the most harm with covid 19. Ironically, it sounds like a degree of immune modulation might actually be a good thing with Rebif and other interferons being tested as treatments for critical covid 19 cases. Could MS patients DMT dulled immune systems actually be a good thing??? Let’s hope.

    • Ed Tobias says:

      Dave,

      I’ve also read of the possibility that an overreaction by the immune system when the virus enters the lungs is what causes the severe lung damage seen in some COVID-19 patients. Also, that the immune modulation of some of our DMTs might offer some degree of protection from this damage.

      I guess we’ll find out, eventually.

      Ed

  4. Georgia says:

    Thanks for your information. Gave me a little more insight. I take Tysabri and touch wood have had no relapses since diagnosis March 2018. I have to go out shopping for my elderly parents as I drive but I use wipes, the clothes I wore go straight into my washing machine. Think stating calm, being sensible and following social distancing advice is all I can do right now. Stay safe stay healthy everyone 🙏🏽

    • Ed Tobias says:

      It sounds as if you have your act together, Georgia. Good luck with your Tysabri. It worked well for me for seven years. Take a look at my column that was published this past Friday, “Have you Tested Positive for Coronavirus With MS?” It has info from people with MS who’ve tested positive and are on DMTS.

      Stay well,

      Ed

  5. Julie Wheeler says:

    Great information! Thanks! I was on Tysabri for almost 10 years and it worked well until recently. I was doing the wash out period and then COVID-19 hit. I was suppose to start Mavenclad but I was hesitant. My doctor finally decided to hold-off on it. I have found that a positive attitude helps tremendously but I am starting to get nervous about if and when I will start having exacerbation again. Summer, heat, etc … too many factors going through my head. LOL Stay safe everyone! We will get through this!

    • Ed Tobias says:

      Hi Adrianne,

      There have been suggestions that the interferon DMTs, such as Avonex, may provide some level of protection against COVID-19 because interferons interfere with a virus’ life cycle. There was an interesting article in the August 31 Washington Post about this and several studies are underway. However, there’s not yet been any solid information.

      Here’s something from the National Institutes of Health about interferon beta 1-a, which is what Avonex is.

      https://www.nih.gov/news-events/news-releases

      Ed

  6. Chris says:

    Take a look at people who have had covid and are still suffering symptoms. It runs the gamut. Kind of reminds me of the MS virus connection. EBV etc. There are different paths to MS. But the one promising one is the magic bullet that kills all viruses. That would solve all those little demonic viruses laying dormant in the body…Let’s hope!

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