Coronavirus and MS: Societies speak out

How do we protect ourselves from the coronavirus? Are people living with multiple sclerosis, and maybe with disabilites too, among those considered vulnerable, and so more at risk? Should we stop taking disease modifying therapies that lower our immune systems? As the spread of the virus continues apace, so does the clamour for more information, for advice, for definitive answers.

And the answers to those three questions seem to be: for protection, follow the guideline issued by the authorities in your country; MSrs are not necessarily more at risk; and maybe stop taking some DMTs, but consult your doctor first. That’s the response from leading MS societies.

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latest newsLATEST…UK…LATEST…UK…

Britain’s over-70s as well as younger people with certain conditions face long isolation

matt hancock

Health secretary Matt Hancock on BBC1 yesterday, Sunday , announcing the new restrictions.

The BBC reports: Every Briton over the age of 70 will be told “within the coming weeks” to stay at home for an extended period to shield them from coronavirus, health secretary Matt Hancock says.

He told the BBC the advice will not come into force just yet but when it does it will last “a very long time”. (Possibly as long as three or even four months – Editor).

All deaths so far have been of people over 60 or with underlying conditions.

Over-70s – and younger people with certain health conditions – will be told they must remain at home and have groceries and vital medication delivered. The health secretary said people without symptoms would be able to visit older relatives and friends as long as they stay two metres – or six feet – apart from them.

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nmssIn the USA, the National Medical Advisory Committee of the NMSS (National MS Society) recommends that those of us who have MS should:

  • follow CDC (Centers for Disease Control and Prevention) guidelines and these additional recommendations for people at risk for serious illnesses from COVID-19.
  • continue disease modifying therapies (DMTs) and discuss specific risks with their MS healthcare provider prior to stopping a DMT.
  • before starting a cell depleting DMT1 or a DMT that carries warnings of potentially severe increase in disability after stopping2, together with their MS healthcare providers, consider specific risks (e.g. age, comorbid health conditions, location) and benefits.

The NMSS point out that these recommendations are the expert opinion of the National Medical Advisory Committee and are based on their clinical experience and assessment of the limited data available regarding COVID-19 and MS DMTs. They have been endorsed by the CMSC (Consortium of Multiple Sclerosis Centers) and members of the MS Coalition3.

The society says it is continuing to monitor this quickly evolving situation and these recommendations may be modified as more data becomes available.

ms societyIn the UK, the country’s MS Society has given more detailed information about DMTs. It says: “If you think you have coronavirus, but don’t have a diagnosis, talk to your MS team about whether you should stop or change treatment.

“DMTs suppress your immune system, which can make your chances of catching an infection higher. But the risk is different for each one.”

It goes on to say that this is what it knows, right now, about specific DMTs.

Glatiramer acetate (Copaxone), teriflunomide (Aubagio), dimethyl fumarate (Tecfidera) and beta-interferons (various brand names) do not significantly increase your risk of infection as they don’t suppress your immune system.

“If you’re taking natalizumab (Tysabri) carry on as normal. We’ll be closely monitoring the situation and updating this page if anything changes.

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 the virus.

“If you’re thinking about beginning a course of fingolimod soon, you and your neurologist could consider an alternative DMT for now.

Talk to neurologist: Consider delay

“If you’re taking a course of alemtuzumab (Lemtrada), or cladribine (Mavenclad), you and your neurologist should consider delaying it. This is because these treatments can increase your risk of viral infections, especially in the few months following treatment.”

It continues: “The case for waiting could be particularly strong if you’re scheduled for a second or third course of treatment of one of these DMTs. A delay of a few months is relatively unlikely to affect the clinical progression of your MS.

“Before cancelling 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.”

The society urges people to go to the coronavirus care and support page on its website to read about precautions they could take if they have recently had an infusion of alemtuzumab or cladribine.

Ocrelizumab (Ocrevus) 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.

“The case for waiting could be particularly strong if you’ve already taken it and are scheduled for a follow-up infusion. A delay of a few months is relatively unlikely to affect the clinical progression of your MS.

Siponimod (Mayzent), ofatumumab (Arzerra) and rituximab (various brand names) are not available on the NHS, but some people get them by private prescription in the UK. These drugs could also affect your risk of getting COVID-19. If you’re taking any of them you should discuss your treatment with your neurologist or health professional.

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. You and your neurologist or healthcare professional should consider delaying this treatment.

“Read about precautions you could take, if you have recently had HSCT, on our coronavirus care and support page.”

Steroids and clinical trials

Turning to the use of steroids and involvement in clinical trials, the MS Society says: “Whether you should take steroids or not depends on your specific circumstances and how severe your relapse is. You should discuss it with your neurologist or MS team. Advice about clinical trials will be different depending on what you’re testing. So, you’re always best to speak directly to your trial team about it.

Going that extra step, if a health professional confirms you have coronavirus COVID-19, you might be advised to stop taking your DMT.

“This means do not inject yourself or take your tablets. Contact your MS team as soon as you know and they will tell you when it’s safe to start taking them again,” says the society. “If you’re due to have an infusion this needs to be delayed.”

Finally, if there is any concern, the society urges people with MS to contact their neurologist or other health professional for more detailed advice.

Notes

1 Cell depleting therapies include: Lemtrada, Mavenclad, Ocrevus and Rituxan (used off-label in MS).

2 DMTs with a warning of potentially severe increase in disability after stopping include: Gilenya and Tysabri.

3 Members of the MS Coalition include: Accelerated Cure Project for Multiple Sclerosis, Can Do MS, Consortium of Multiple Sclerosis Centers, International Organization of Multiple Sclerosis Nurses, MS Views and News, Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, National Multiple Sclerosis Society and United Spinal Association.

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keep up to date

Don’t let yourself be left behind

As this is a quickly evolving situation, these recommendations may be modified as more data becomes available.

The information on coronavirus and MS is being constantly updated. So, be sure to use the links provided above to the NMSS and MS Society websites to check on the very latest advice and information.

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Spelling

Please note that being born in the UK, all my posts, are written using British English spelling.

For example:

Centre                             not center (except in names, Centers of Disease Control)                  Colour                              not color                                                                                                                      Diarrhoea                       not diarrhea                                                                                                  Haematology                not hematology                                                                                Haematopoietic          not hematopoietic

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50shadesofsun.com is the personal website of Ian Franks. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. More recently, he was a freelance medical writer and editor for various health information sites. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is for your general knowledge only. It is not a substitute for medical advice or treatment for specific medical conditions. Ian is not a doctor, so cannot and does not give you medical advice. You should seek prompt medical care for any specific health issues. Also, consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely his own unless otherwise stated.

2 thoughts on “Coronavirus and MS: Societies speak out

  1. Hi, I am scheduled to receive stem cell therapy next week (Tuesday, 3/24) where they plan to introduce Mesenchymal stem cells intravascularly along with intrathecal delivery. So far as of this writing it’s still a go, but I am so stressed out with this whole COVID-19 situation. Do you feel it is still a safe thing to do? I mean, it’s Sunday night right now, Stemedix (the facility where I’m having this done., in St. Petersburg, Florida ) May contact me tomorrow to postpone this procedure. But if it still a ‘go’ do you feel this is a relatively safe procedure to have done during this crisis? I’m also nervous because we had booked flights to Florida. If I am to still have the procedure, would driving be a better alternative? I know I am asking a lot of heavy duty questions , and I do plan to call my Neurologist tomorrow and pose these same questions to him as well. I would just value your input on this. Thank you, Cindy Rodgers

    Like

    • Hi Cindy, I am NOT a doctor. I am a journalist specialising in medical matters, particularly MS and disability. Having said that, as far as I am concerned, the only stem cell treatment that has any value against MS is HSCT. What you are planning to have done is NOT HSCT, and I really question its true value to you. As far as the current crisis is concerned, sorry, but I’d wait until danger is past. Good luck, whatever you decide.

      Like

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