#COVIDMS COVID-19 pandemic changes the rules

I am at an MS meeting in Frankfurt and was speaking to an Italian neurologist about the COVID-19 or coronavirus pandemic and he informs me that in Milan, the epicentre of the Italian outbreak, they have stopped dosing their MS patients with ocrelizumab, alemtuzumab and cladribine until the epidemic has passed.

Interestingly, they are not stopping fingolimod, which leaves a whole cohort of pwMS at high risk of complications from COVID-19 if they get infected. As I have said in a previous post that the risk of complications from COVID-19 is likely to be higher on natalizumab as well; natalizumab blocks trafficking of lymphocytes into the CNS and gut. These compartments may allow the virus to escape the immune system and cause damage or prolong the infection.

In my post from two days ago, I added a postscript that predicted the Italian response to the virus, i.e. once COVID-19 becomes established in the community and person-to-person spread becomes more common and the source of infection(s) can’t be traced, which is happening in Italy, the public health advice will change. In this situation reverse quarantine becomes necessary, i.e. high-risk individuals need to take extra precautions, potentially self-isolating themselves so as not expose themselves to the virus. Not dosing certain DMTs, and stopping other DMTs, is part of this containment strategy.

Please note this is not necessary in the UK as all the cases have been linked to a clearly identifiable source.

John Hopkins CSSE

John Hopkins has put together a very useful website to track the pandemic in real-time. You may want to refer to this for up to date information on what is happening in your country.

The reality of the situation is a known unknown; it is only a matter of time before someone with MS, who is immunosuppressed, will be infected and succumb to the infection. It is the MS community’s responsibility to try and prevent this from happening.

CoI: multiple

60 thoughts on “#COVIDMS COVID-19 pandemic changes the rules”

  1. Do you know the reasoning behind why they’re not stopping Fingolimod? Is it because of the rebound effect or do they have other reasons?

  2. Despite the spread of the virus you are still flying out to international conferences! You will be in airports, on aeroplanes and in close proximity to people in seminar rooms and conference halls. There is a risk that you will pick up the virus and come back to the U.K. what worries me more is that you are fit and healthy but could pass the virus to your patients. If Geneva can cancel the international show surely the MS event in Germany could have been cancelled. I think it’s time to rethink the need to keep attending MS international events – not just for the planet, but to reduce the risk of increasing the spread of viruses (Corona virus will not be the last pandemic). Perhaps you can reflect on this when enjoying your Bratwurst and a tankard of German beer. I hope the AAN and ACTRIMS / ECTRIMS meetings are cancelled this year. This merry go round of back slapping, prize giving, together with the cost of attending is an insult to the MS patients sitting at home getting more disabled.

    1. Good point. Have cancelled a trip next week to Japan. I suspect the AAN (Toronto) and ACTRIMS/ECTRIMS (Washington) will be cancelled. And the Olympics as well.

      1. Hi. Could you please tell us what you know about why they haven’t included Fingolimod? Rebound risk or something else. Concerned for my 22 yr old daughter. Thanks

      2. I don’t know, but I suspect rebound is one reason, but the main reason is that fingolimod is a relatively mild immunosuppressive and most pwMS on fingolimod deal with viral infections without too many problems.

      3. I really appreciate you taking the time to reply. Helps us decide next steps. Thank you

    2. My thoughts entirely. It was at a conference in Singapore that spread a whole lot of virus. I’d be concerned if I was a patient of prof g

  3. Appreciate this straight- talking post with clear advice for PwMS, ProfG.
    If only the whole UK MS community, in fact the international community had knowledge of this site so that every PwMS could benefit from this!

    Notice that the US and other places are saying to avoid contact such as hugs and handshakes etc. Wish that the UK were reinforcing such behaviour alongside the ‘sing Happy Birthday twice’ quality of hand washing.

    As things unfold perhaps you’d kindly update your advice as to whether to avoid group gatherings etc. I’ve two family members with season tickets to a certain London club and the three of us are due at a family wedding at Peterborough Cathedral at the end of March.
    It’s very helpful to put behaviour down to guidance from a HCP and not appear to be some sort of hypochondriac or a total misery-guts.

    Thanks so very much for this site! My family, friends and I have been able to live so much better with MS thanks to it.

    1. The R-zero for COVID-19 is estimated to be 2.3 (see below) although some critics have said it may be higher. R-zero is the number of people an infected person infects and indicates how infectious the disease is. Based on this figure and the assumption that preventive measures will be adopted the pandemic may be quite limited. The big unknown is how public health services and individuals will respond to the pandemic.

      Common sense should rule the day and at the moment there is no indication that we have an epicentre in the UK that has been identified in several other countries.

      Zhang et al. Estimation of the reproductive number of Novel Coronavirus (COVID-19) and the probable outbreak size on the Diamond Princess cruise ship: A data-driven analysis. International Journal of Infectious Diseases Published: February 22, 2020.

      Backgrounds: Up to February 16, 2020, 355 cases have been confirmed as having COVID-19 infection on the Diamond Princess cruise ship. It is of crucial importance to estimate the reproductive number (R0) of the novel virus in the early stage of outbreak and make a prediction of daily new cases on the ship.

      Method: We fitted the reported serial interval (Mean and standard deviation) with a gamma distribution and applied “earlyR” package in R to estimate the R0 in the early stage of COVID-19 outbreak. We applied“projections” package in R to simulate the plausible cumulative epidemic trajectories and future daily incidence by fitting the data of existing daily incidence, a serial interval distribution, and the estimated R0 into a model based on the assumption that daily incidence obeys approximately Poisson distribution determined by daily infectiousness.

      Results: The Maximum-Likelihood (ML) value of R0 was 2.28 for COVID-19 outbreak at early stage on the ship. The median with 95% confidence interval (CI) of R0 values was 2.28 (2.06-2.52) estimated by the bootstrap resampling method. The probable number of new cases for the next ten days would gradually increase, and the estimated cumulative cases would reach 1514 (1384-1656) at the tenth day in the future. However, if R0 value was reduced by 25% and 50%, the estimated total number of cumulative cases would be reduced to 1081 (981-1177) and 758 (697-817), respectively.

      Conclusion: The median with 95% CI of R0 of COVID-19 was about 2.28 (2.06-2.52) during the early stage experienced on the Diamond Princess cruise ship. The future daily incidence and probable outbreak size is largely dependent on the change of R0. Unless strict infection management and control are taken, our findings indicate the potential of COVID-19 to cause greater outbreak on the ship

  4. The UK now seems to have someone infected who has not travelled anywhere ‘risky’ and who hasn’t been in contact with anyone has. Does that mean the UK should now stop treating MS patients with these drugs? I don’t know of anyone who has had any communication from their MS teams on this issue at all. Not a word.

    1. I am not sure all MS centres have a mechanism in place to contact all their patients. We only have permission to contact a small proportion of our patients by email and not all of our patients are coded as having MS on our system. The latter is a legacy issue from when we transferred from a paper-based to an electronic recording system. One way of addressing this is via our blog.

      1. That’s the problem with EPR, patients are lost from the systems or the information is inaccurate. Who is taking responsibility? Surely it’s not the medical teams.

      2. We are catching up slowly, but probably need to employ someone to go through all of our clinics and hospital admissions over the last 24 months to make sure everyone coded. We don’t have consent for email, only regular mail and SMS texting. We could do it via texting.

      3. The software companies should have the capacity to do this. If the User Acceptance Testing had been thorough, they would have done a reconciliation prior to the go live date. I hope the NHS doesn’t have to foot the bill.

      4. The problem is the paper notes weren’t digitalised. Our EPR is provided by Cerner Millennium m

      5. Is that different for all hospitals are each one only as up-to-date as the Manpower which was employed to transfer the paper files?
        Also I wonder whether all of a patient notes were digitalised or only from a certain year?

      6. I am Ahmad from Lebanon, I am Ms patient too.Iam on Gilenya.we have cases of corona virus in our country!! As I read somenotes about fingolimod, how often do I have to be worried about my immunity.or do you advise me to stop med for a while if Iam stable with MS.

      7. Madybe you are stable because of fingolimod. You should consult your neurologists as we now that disease can rebound if you stop fingolimod without a plan of what to do next.

  5. Hi Prof G, thank you for all your updates on COVID-19 & letting us know more factual info and scenarios. As previously mentioned, you are the only Neurologist that is actively concerned about pwMS! I saw my MS Nurse on Monday, & although a really good productive meeting – the virus wasn’t mentioned (time also was against us!). I’m on ocrelizumab – 1st & 2nd infusion Nov/Dec 2019. I’ve had 5 (possibly related) infections – 1 with fever & chills, headache, you know the usual & each with a course of antibiotics! I’m now okay (ish). I also have had some life-changing events in my life, which have taken their toll. I am due to go to Austria for a few days (on Tuesday) with some really amazing friends to allow myself to recoup & start to give myself time to start grieving. I’m also going, to be honest too – I’m looking forward to it so much & the fun aspect of being with warm & caring people – will do me better – mentally than, self-isolating & watching the news everyday! Lots more reasons to go but now having read your blog – lots of reasons for me to cancel my trip & stay indoor! Any thoughts?

    1. To date, Austria has only had 6 cases and is doing what the UK is doing (case recognition and quarantine). Based on the data I would say the risk of COVID-19 infection in Austria is very low.

  6. Why stop Ms medication while cancer treatment continues? That implies to me that the Ms medications are not seen as overly effective or necessary.
    As a previous tysabri patient who had a horrible rebound I think it sounds concerning that one of the reasons to leave people on fingolimod despite the virus threat is because of rebound
    With the rebound repercussions should threats like new illnesses to the patient or viruses make this drug less appealing?

    1. I am not recommending anyone in the UK stops their medication or delays their treatment. Just be vigilant and apply personal preventive strategies (hygiene and avoid travel to high-risk areas).

      1. Thanks for the heads up. It is all a bit hard to apply in real life. I’ve commented on the blog before I’m due to travel to Rome on Friday. Italy has not got any cases in that region but there’s a risk of it spreading whilst I am there or mixing with others at the airport. My neurologist has said it’s personal choice as he has no additional concerns (unlike this blog post) and the FCO only has a warning out about specific towns so my travel insurance won’t pay out if I don’t go. But the USA has recommended against all non-essential travel to the whole of Italy. I don’t really know how I’m supposed to assess risk in this situation.

        To be frank, the chances of it spreading in the U.K. seem quite high anyway so it may well just turn into a question of risk of quarantine and where! I have kids which makes it even trickier.

      2. Surely it would be wise for those who are about to undergo treatment with an IRT or Ocrevus to postpone and see how this unfolds over the next few weeks? I would be very angry and frightened if I had another dose of ocrevus right before it was stopped!

      3. Cladribine is gone within 24h, alemtuzumab with a month, immature B cells return quickly as do mature B cells. With alemtuzumab you can make an anti-drug response within a month, why would this not be the same for an anti-viral response, understanding this is key to understanding how alemtuzumab work. Ocrelizumab takes about 6 months to go below a depleting level, if people stop and don’t switch we will see if ADIOS (extended interval dosing) idea works

      4. You make it sound as though the drugs are not a problem with such a virus around so why are they stopping the drugs in Italy?

  7. Hi, Thanks a lot for your helpful blog. I am an RRMS patient in England with the following history:
    Disease onset with simultaneous disabling transvers myelitis and right optic neuritis Mar 2017, Plegridy started April 2017, Disabling right optic neuritis relapse Oct 2019 and Sudden Sensorineural Hearing Loss Nov 2019. Eligible for Cladribine, Ocrelizumab or Fingolimod.
    I chose cladribine in Dec before coronavirus outbreak. I am due to start it soon after tests and flu and pneumonia vaccinations. I have some concerns about it now as I am a lecturer at university and in contact with many international students. Could you please suggest if I should start cladribine, delay cladribine for now, or request fingolimod instead? Many thanks for your help.

    1. We can’t give personal advice on this blog, you need to ask your MS team for advice. In Milan, they have halted cladribine dosing. My policy at the moment is to go ahead as usual and to warn our patients to take extra precautions and to avoid travelling to high-risk destinations. This advice may change if the situation changes in the UK.

  8. Is the media and response to this virus not being blown out of proportion somewhat?

    You often say things as they are, and of course I understand that its ideal if it can be contained before we see really how bad it can get.

    However, in terms of number deaths /cases etc they are nowhere near as high versus the fear factor that is being pumped out there. just look at the irrationality in the stock market, which just adds to the fear..

    I am just looking for some balance on the topic, as right now, I expect the odds to get the virus would probably be as likely as winning the lottery tonight.

  9. To the university lecturer with worries about international students. The January intake is now in situ and they will have presented with the virus already. Students at my university were advised not to go back to their home destinations if seriously affected during the Lunar NewYear in case travel restrictions prevented them returning to the UK. We are worried but let’s get it in perspective and get the advice to students and staff accurate.

  10. In the UK health chiefs are advising over 60’s to avoid crowded areas and public transport due to the virus. This is stated in the Daily Mail paper today, so this surely also applies to people with MS?

    1. This is World Health Organisation advice, not the UK government or NHS advice. And yes the advice is aimed at people of all ages, with serious health conditions.

  11. The maps being published are misleading, just highlighting the country is useless. The last time I was in the Canary Islands they were off the coast of west Africa. Showing Sicily and Sardinia(high MS population) where the virus had not occurred at the time of publishing is scaremongering. It strikes me no one knows how this crisis is going to develop, but sitting in a hospital clinic and patients are sitting there with masks and yet not washing hands or using gel. Self check in screens, sanitizer gel sparsely available, cleaning staff invisible(at one time they were everywhere), a recipe for infection. Let’s put the focus on hygiene, not flawed maps that are rapidly out of date.

  12. Some if the hand sanitisers are antibacterial only, they probably wouldn’t be much help with viruses, so washing hands with soap better.

    1. I think hand sanitisers maybe have to be at least 60% alcohol to be effective against viruses?

  13. How long does it take for someone’s immune system to recover sufficiently after stopping a DMT – perhaps the pandemic is over before that happens? So little point in stopping treatment as is happening in Italy?

    1. It depends on what you are taking and what it has done to your immune system for example in some people DMF causes long term lymphopenia, for some of the more potent drugs it can be years before things go back to normal. The important question is how the immune system deals with the virus. As you say if you half ocrelizumab the the B cell immune system is suppressed for 6 months, so it may be harder to make an anti-viral antibody response. But if CD8 T cells are important then there may be limited effect.

  14. Hmmm, trying not to be terrified. I live in the US (North Carolina) and am scheduled to have my second round of Lemtrada treatments in May. I can self-isolate for several months after, but I have a husband and children who will still be out and about and of course they could bring covid-19 home despite precautions. My MS is aggressive so not treating is also very risky. Do you have any words of wisdom for me? The media keeps throwing around, “You’ll be fine—as long as you don’t have underlying health issues.” But what of those of us who do? Do I delay—though this may be no better in July than it is now. Do I discuss alternative treatments?

    We were planning a big family trip to Europe in April as well—I’m thinking that should be avoided as well…

  15. Hi and thanks for the great job! Are there any recommendations regarding Aubagio 14mg as it is a immunosuppressive? News are starting to get me nervous as to what to expect. I’ve heard that obviously individuals with los immune system are part of the so called “risk population”. Thank you in advance

  16. Hello from Sweden.

    Why do you guys think it is a risk to take Tysabri when we have this coronavirus activity.

    The neurologist here in Sweden say that it is no risk.

    I am sick in MS and have used Tysabri for about 6 years.
    I guess it could be a big risk, because i get sick very very easy and also when i get sick i really get bad sick. CRP i think was over 140 one time.

    I also have low D-vitamin in my body, i am at 30 right now. I know it should be over 50-75 at least.

    Thank you very very much for a answer.
    Wish you the best.

      1. I agree. The risk to people on natalizumab is likely to be very small. In comparison, the risk of rebound MS is likely to be worse.

      2. What is the evidence.for.or.against vla4 being important in lung migration

      3. Why is no mention made in this advice of the potential for viruses to cause relapses and even reactivate inactive MS?

      4. It is, but speaking personally, I have slow PPMS which is very stable if I avoid viruses. Self isolation in flu season, avoiding crowds etc. is routine for me. I am not on any medications at all, nor do I have any other health issues, but I’d have been interested to know if a new virus like this has greater potential to trigger disease activity. I’m surely not the only one with this question? 🤔

  17. Recommend this interview with Richard Hatchett CEO of the Coalition for Epidemic Preparedness, on C4 news last night. It’s 20mins long and he definitely presents COVID19 from the scary angle. However, he makes a brilliant point makes about 10mins in about the added risks represented by young people being so relatively safe from coronavirus. He adds what a meaningful role they can play in mitigating the spread. I’ve shared with the large number of young adults in my life. Figured some of you may wish to do the same.


      1. People outside UK can view this – I put the link on Facebook and a relative in Nee Zealand has watched it.

      2. Thanks for this information, sometimes TV content can only be viewed by UK IP addresses

  18. Dear Prof, have you got any comments on how Clabidrine patients could be affected by COVID-19? Thanks and best wishes.

  19. I’m 64yrs old the other morning I woke up with chills and head pain no fever just chills could I have COVID 19 mine lasted for one day

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