We've received some questions about the COVID-19 (coronavirus) and its impact on people with MS, particularly those on immunosuppresive DMTs. We've tried to answer these queries in this blog post.

handwashing

Whether or not the current global Coronavirus outbreak is technically a “pandemic” or not is largely arbitrary, it has involved enough people in enough countries, and there is no doubt that it causes significant cause for concern.  This is a virus never before seen in humans, and therefore there is no herd immunity against it. It also appears to be extremely infective, and at latest count there are an estimated 84,000 cases with almost 3,000 deaths worldwide.

The symptoms of coronavirus to look out for:

  • Cough

  • High temperature

  • Shortness of breath

But these symptoms do not necessarily mean you have the illness, the symptoms are similar to other more common conditions, such as cold and flu.

It must also be kept in perspective. Seasonal influenza (“the flu”) kills between 50,000 – 60,000 people globally each year, and gets nowhere near the same media coverage, let alone a stock market crash!  The flu is also potentially a new virus every winter, and whilst there is a vaccine, the evidence for its effectiveness is not always that promising. COVID-19 is in many ways simply another flu.  

So far, the epidemiological data tells us that this a condition with a rule of fifths:

  • 4 in every 5 sufferers recover quickly with minimal to moderate symptoms only, requiring no treatment
  • 1 in every 5 sufferers are more severely affected, requiring medical assessment and possible hospital care
  • A further 1 in 5 of this 1 in 5 group become very unwell, requiring more intensive supportive treatment
  • The current mortality risk is between 1 and 2 for every 100 people infected.

How to reduce risk 

The best general prevention strategy seems to be through simple hygiene measures:

  • Cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze

  • Put used tissues in the bin immediately

  • Wash your hands with soap and water frequently – use hand sanitiser gel if soap and water are not available

  • Try to avoid close contact with people who are unwell

  • Do not touch your eyes, nose or mouth if your hands are not clean

Like with influenza, we know that the elderly and people with other serious health conditions are at increased risk of complications and death from Coronavirus, so there is a natural anxiety amongst the MS community as to what Coronavirus might mean for us, especially when many are also taking immunosuppressive drugs.

There is obviously a degree of uncertainty with COVID-19 specifically, but if you apply the basic principles from what we already know about other infective diseases and those undergoing chemotherapy or taking MS treatments, the news is generally reassuring.

Changes to treatment

Doctors are very unlikely to recommend stopping your disease-modifying therapy (DMT) at present. The immunosuppression associated with DMTs is relatively mild and therefore most people with MS (pwMS) can combat infections relatively well. The exceptions are alemtuzumab (Lemtrada), and potentially cladribine (Mavenclad), during the early stages of treatment, when the lymphocyte (a type of white blood cell that fights viruses and bacteria) count is low.  Once the immune system has rebuilt itself, there should be no issue in dealing with infections.

Fingolimod (Gilenya)

Although fingolimod (Gilenya) causes a low lymphocyte count, they are simply trapped in lymph nodes rather than circulating in the blood.  Therefore, pwMS on fingolimod can generally combat viral infections, although they tend to have more frequent and possibly more severe infections. This also applies to the other drugs in the same class (siponimod, ponesimod, ozanimod).

Anti-CD20 therapies

The immune response to viruses whilst talking the anti-CD20 therapies (rituximab, ocrelizumab and ofatumumab) should also be almost normal, but may be slightly slower than in the general population.

Natalizumab (Tysabri)

In those taking natalizumab (Tysabri), there is a potential concern over COVID-19 and a brain infection called encephalitis.  This is similar to the infection PML, and due to the drug preventing the immune system from “patrolling” the brain. But, at present, we don’t know if this particular type of Coronavirus has that potential, and even if it does, it generally only happens in those who are severely immunocompromised.  If you are concerned, we would suggest discussing this with your MS team.  

Tecfidera (BG-12, dimethyl fumarate)

Tecfidera has only a mild immunosuppressive effect, so it is unlikely to cause a significant issue with COVID-19, unless your lymphocyte count is very low, e.g. less than 0.8 x 109/L.

Other DMTs

Teriflunomide (Aubagio), glatiramer acetate (Copaxone) and interferon beta (Betaferon, Avonex, Rebif, Plegridy) are not immunosuppressive and should not increase your risk of COVID-19.

As the situation now stands, the risk of COVID-19 infection to the general public, and hence pwMS is low, outside of certain areas (mainland China, South Korea, Iran and Italy). It would therefore not be routinely recommended to change your DMT or delay a planned infusion at this stage.

If however you are currently immunosuppressed, it is very important to be extremely vigilant about hygiene (handwashing, etc.) and to avoid travel to high-risk areas. 

The benefit of using a face mask to protect against COVID-19 is largely unknown, as this is a new pathogen to humans.  At present, it also appears the virus is spread by droplets, rather than being aerosolised, and therefore sits on surfaces rather in the air.  For that reason, rigorous hand hygiene is likely to be more effective at preventing spread. It is also very dependent on the quality of the mask you are wearing, as to whether it provides any meaningful protection.

Advice

For more information on the current situation in your area and for travel advice and restrictions, please refer to your local Public Health Authority and Government information sources.

Information correct 2 March 2020

PLEASE SEE BLOG FOR LATEST UPDATE - 13 March 2020


References:

https://www.worldometers.info/coronavirus/

https://multiple-sclerosis-research.org/2020/02/pandemic/

https://www.nhs.uk/conditions/coronavirus-covid-19/

COVID-19
Hide commentsShow comments

DeeDee (not verified)

I’m more worried about exposure causing a relapse. This is something our immune systems haven’t encountered yet, and most of my relapses have occurred after having a virus. Aside from precautions I normally take during flu season I’m also focusing on a healthy nutrient dense diet, exercise and being well rested. Which I usually do anyway...

Heronette (not verified)

This advice is not what we've been told. My husband's Ocrelizumab infusion has been postponed as they say he is at much higher risk of developing complications with Covid 19, it's not the mild illness that you outline above in people with suppressed immune systems. Perhaps a bit more research and clarity is needed on this.

Sandy (not verified)

Hi Dee Dee I echo your concerns. A lot has changed in a week. My mantra has been I commit to living healthily. And I reassure myself that I can only catch it from people so am minimizing contact and trying to stay calm. Keep safe. 21/3

Jane Staffors (not verified)

Well you lot I,m on house arrest for the next twelve weeks. That scares me!! but I would rather be safe than sorry, and Alive. If we all took the same precautions then things would be so different. It makes me feel like I am in a war. Them on the outside and us staying at home, keeping safe,

Rebecca Hoover (not verified)

Thanks for the useful information! I have linked this to my own Facebook page on MS to help share the information.

Maria M (not verified)

Thank you for this. It’s great to have some reassurance in this worrying time.

JenT-D (not verified)

I didn't see Ocrevus listed in the blog. Was sit referenced by another name?

Lucy-OMS

Hi Jen,

Yes it is, Ocrevus is the name for ocrelizumab -

Anti-CD20 therapies
The immune response to viruses whilst talking the anti-CD20 therapies (rituximab, ocrelizumab and ofatumumab) should also be almost normal, but may be slightly slower than in the general population.

Heronette (not verified)

Lucy - the advice may have been correct on Feb 2nd but it is NOT correct now. Ocrelizumab does not leave you with 'a slightly slower' immune system. This is a really damaging statement. Please amend your content to something that's less than a month out of date. It is extremely irresponsible for you to have this information on this site.

Mess Positif

I assume that the OMS lifestyle as a whole should maximise our immune system resilience, but wonder is there's anything more that we can do to boost our natural defences (especially if we're older men!).

Faye (not verified)

I note that the above article states that the mortality rate is around 1 or 2% and it is already quite widely publicised that the greatest risk of death is for those who are elderly AND have chronic medical ocnditions. This death rate is about twice that of HSCT, but that's not a figure that many people would take on board.

LuckyCalliope (not verified)

Thank you for this information. It makes me feel a little bit better.

Laura Lockwood (not verified)

Thank you for the detailed update. Regarding your update on Tysabri. I am wondering how I could tell if/when I fall in to the 'severely immunocompromised'. I take Tysabri, I am JCV negative, I don't have any on going MS symptoms., and I catch a cold about once a year. Thanks in advance. Laura

Sophie OMS

Hi Laura, unfortunately we can not offer individual advice and would recommend you discuss this with your medical team.

Heronette (not verified)

the advice above is not in line with what we have been told my our MS team. My husband's Ocrelizumab infusion has been delayed as they regard him as higher risk should he develop COVID 19. More research and clarity please.

Lucy-OMS

Hi there - this information was correct as of 2 Feb (date at the bottom) advice is constantly changing, we would always recommend people consult their own MS team who will be the best informed and will be able to comment on an individuals care. This blog is not intended as advice , just information, as we were receiving many direct queries about this.

Lucy-OMS

We have published updated advice here: https://overcomingms.org/latest/coronavirus-covid-19-update-13-march-20… This includes advice for people who have yet to start a treatment and those who are currently on a DMT (including ocrelizumab)

-If you are on ocrelizumab, please be aware that the risk of viral infections is moderately increased. So you may be more prone to coronavirus infection. For
many people on ocrelizumab, this risk is outweighed by the effectiveness of ocrelizumab in controlling their MS. The MS team may consider delaying a further round of ocrelizumab until the risk of coronavirus infection is clarified or has passed, because it is clear from experience with a similar drug, rituximab, that an infusion of ocrelizumab will remain effective at controlling MS for longer than 6 months.

-Ocrelizumab is a highly effective treatment of MS and more effective than fingolimod. After the first two infusions [a fortnight apart], it causes a moderate
increase in the risk of viral infections that persists for months. If someone on ocrelizumab gets coronavirus, the drug’s effects on the immune system cannot be reversed, so the likelihood of complications from an infection is probably higher than if taking a drug which can be stopped.

Caroline Logan (not verified)

Thanks for the information every little helps, I’m not on MS drugs so my only worry is a weak immune system I attended a MS centre we are all being very careful, and hand washing is easy enough, I’ll pass this information to our group, much appreciated, I’ve just got over a really bad cold, and although it left me flat out, I’m fighting fit now and ready for anything
Thanks again
Caroline 🧡

vanessaaa (not verified)

Thank you - I was wondering about all this. I also had thoughts along the same lines as what Dee Dee mentions regarding viruses and how a person with MS responds to a new virus and the effects a 2-3 months after a new virus. That is my question really (as I'm on copaxone and I knew it wouldn't be an issue as it doesn't effect my immune system).

Darlene (not verified)

Hi Johnny, I am currently in a relapse - does this mean I am immunosuppressed at present? If so, what would the advice be? Thanks, Darlene

Sophie OMS

Hi Darlene, unfortunately we can not offer individual advice and would recommend you discuss this with your medical team.

Sheby (not verified)

Thanks for the info. I am on Gilenya and also vegan therefore my lymph count is 0.2 which is the lowest to continue the drug treatment. Would you then say I am at risk due to very low count? Also could you please clarify how Gilenya works? If they are trapped in lymph nodes, can they be activated if I get a virus?

Lucy-OMS

Hi @Sheby we cannot comment on individual cases - there is some info on Gilenya on our website here: https://overcomingms.org/recovery-program/medication/exploring-your-ms-…. This is the advice publsihed for fingolimod If you are on fingolimod, please be aware that the risk of viral infections is moderately increased. So you may be more prone to coronavirus infection and its complications. For most people on fingolimod, this risk is outweighed by the effectiveness of fingolimod in controlling their MS. So, we recommend most people continue on fingolimod. It is important not to stop fingolimod without speaking to your MS team, because there is a risk that multiple sclerosis will become active and cause relapses in the weeks after stopping the drug. latest update: https://overcomingms.org/latest/coronavirus-covid-19-update-13-march-20…

Martin Matko (not verified)

So called M$ doesn't have a vaccine after 60+ years of Neurology Research. Maybe there is a Pharmaceutical that change or alter(modify) Caronaviru$!?

Lucy-OMS

HI Martin, 'MS' isn't a virus or bacteria so it is not possible to create a vaccine for MS. There are links between epstein-barr virus and MS, and a vaccine is being looked at for this purpose. A coronavirus vaccine is currently in development.

Mary b (not verified)

I have. Begnign MS and do not take any DMT drugs am I going to be OK WITH. COVID-19?