#COVIDMS COVID-19 and DMTs

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The coronavirus/COVID-19 pandemic is getting people with MS (pwMS) who are on a DMT to rightly question whether or not their immune systems are competent to deal with a COVID-19 infection. Unless you are on interferon-beta, glatiramer acetate or teriflunomide, the so-called immunomodulatory therapies, your immune systems are likely to be compromised and hence you are at risk of getting more severe COVID-19 infection or secondary complications of an infection. 

Based on the immunological principles that antiviral responses are mainly driven by T-cells and natural-killer cells and less so, at least initially, by B-cells there is a hierarchy of immunosuppression on the DMTs. At the top of the list must be the immune reconstitution therapies during the depletion phase fo the treatment, i.e. HSCT, alemtuzumab [Lemtrada] and cladribine [Mavenclad]. For the maintenance treatments, I would rank them in descending order as being natalizumab [Tysabri], S1P modulators (fingolimod [Gilenya] / siponimod [Mazent] / ozanimod / ponisemod), anti-CD20 (ocrelizumab [Ocrevus] / rituximab / ofatumumab / ublituximab) and in the rear the fumaric acid esters (DMF [Tecfidera] / diroximel fumarate [Vumerity]). With the fumaric acid esters, this low ranking will not apply applies if your lymphocyte counts are low, i.e. generally lower than 0.8×109/L or 800/mm3

I have put natalizumab at the top of the list as we don’t know how neurotropic this virus is. If it is neurotropic, i.e. has the ability to infect the brain natalizumab is risky. Natalizumab creates a compartment that is protected from the immune system and hence puts people at risk of COVID-19 encephalitis.

Because of the coronavirus/COVID-19 pandemic should I stop my DMT? No, you should not. My advice is for you to discuss this with your HCP. There are many factors that need to be taken into account, in particular, the risk of you being exposed to COVID-19 in your country. The risk can be mitigated by hygiene measures and avoiding high-risk travel and places and contacts that may expose you to the virus. The latter strategy will become more difficult as the pandemic spreads and more people in the general population become infected and shed the virus. 

Just stopping MS DMTs, particularly natalizumab and S1P modulators, could result in MS rebound disease activity that is potentially serious. 

Because of the coronavirus/COVID-19 pandemic should I delay further infusions with natalizumab and ocrelizumab? No, you should not make this decision yourself. My advice is for you to discuss this with your HCP. If you are going to stop natalizumab you need to transition yourself onto another DMT. Ocrelizumab and the other anti-CD20 therapies are slightly different in that their treatment effect takes many months and possibly years to wear off so you have more time to think.

As I am about to start cladribine, fingolimod, siponimod, alemtuzumab, natalizumab or ocrelizumab, should I delay treatment? This will need to be discussed with your HCP and the advice will depend on the state of the COVID-19 epidemic in your country or area. For example, if you live in Milan the advice is not to start these treatments. I suspect the COVID-19 epidemic may trigger a large number of pwMS who have yet to start treatment to reconsider their choice of DMT, based on the potential risks of getting a more severe infection on immunosuppressive therapies.

I have been treated with an IRT several years ago am I at risk of infection with coronavirus/COVID-19? Yes, you are. The risk of becoming infected will be no different from that in the general population. 

The advantage of the so-called IRTs (HSCT, alemtuzumab and cladribine) is that they allow immune reconstitution, which refers to the restoring of your immune system to a state of competency after a cycle, or cycles, of depletion. Immune competence in the context of an IRT refers to the ability of the immune system to respond to infections, in particular opportunistic infections, mount an antibody response to vaccines and tumour surveillance. This has been best shown in the context of hematopoietic stem cell transplantation (HSCT) but is likely to be the case for alemtuzumab and cladribine. Please note reconstitution takes years, so if your last course was in the last 12-24 months you may still be immunocompromised. You can get a rough idea of the state of your immune system by looking at your total lymphocyte count, ideally, you want this to be above 1.0 x 109/L or 1000/mm3

Should I switch my DMT to interferon-beta, glatiramer acetate of teriflunomide? This may seem like a logical thing to do, but it is seldom that simple. Most pwMS are on a higher efficacy DMT because they have failed these treatments in the past. Therefore de-escalating your therapy to a previous DMT you have failed may result in your MS getting worse. 

Teriflunomide is an interesting option because it has been shown to have broad antiviral activity and hence has the potential to protect pwMS against COVID-19 infection and its complications. I would propose Sanofi-Genzyme doing urgent studies to test this hypothesis. The Coronavirus pandemic will take months to years to play out and knowing that teriflunomide has anti-coronavirus activity will be useful information for the MS community. 

In summary, there are no easy answers. The pandemic is evolving at a rapid rate and country-specific information will emerge depending on the state of the epidemic in each country. At the same time, there are many anti-viral studies been run and there is a race on to develop a vaccine. My money would be on a DNA-vaccine winning the race, because of the ease of production of these sorts of vaccines. But as always there will be regulatory hurdles to overcome and hence any vaccine studies will be months away.  So don’t rely on there being a vaccine or effective anti-viral drug anytime soon.

Hill-Cawthorne et al. Long Term Lymphocyte Reconstitution After Alemtuzumab Treatment of Multiple Sclerosis. J Neurol Neurosurg Psychiatry, 83 (3), 298-304 Mar 2012.

Background: Alemtuzumab is a lymphocyte depleting monoclonal antibody that has demonstrated superior efficacy over interferon β-1a for relapsing-remitting multiple sclerosis (MS), and is currently under investigation in phase 3 trials. One unresolved issue is the duration and significance of the lymphopenia induced. The long term effects on lymphocyte reconstitution of a single course, and the consequences that this has on disability, morbidity, mortality and autoimmunity, were examined.

Methods: The lymphocyte reconstitution (n=36; 384 person-years) and crude safety data (n=37; 447 person years) are reported for the first patients with progressive MS to receive alemtuzumab (1991-1997). Reconstitution time was expressed as a geometric mean or, when a non-negligible number of individuals failed to recover, as a median using survival analysis.

Results: Geometric mean recovery time (GMRT) of total lymphocyte counts to the lower limit of the normal range (LLN; ≥1.0×10(9) cells/l) was 12.7 months (95% CI 8.8 to 18.2 months). For B cells, GMRT to LLN (≥0.1×10(9)/l) was 7.1 months (95% CI 5.3 to 9.5); median recovery times for CD8 (LLN ≥0.2×10(9) cells/l) and CD4 lymphocytes (LLN ≥0.4×10(9) cells/l) were 20 months and 35 months, respectively. However, CD8 and CD4 counts recovered to baseline levels in only 30% and 21% of patients, respectively. No infective safety concerns arose during 447 person-years of follow-up.

Conclusions: Lymphocyte counts recovered to LLN after a single course of alemtuzumab in approximately 8 months (B cells) and 3 years (T cell subsets), but usually did not recover to baseline values. However, this long-lasting lymphopenia in patients with a previously normal immune system was not associated with an increased risk of serious opportunistic infection.

CoI: multiple

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

90 comments

    • Yes, it does occur! But a clinically meaningful leukopaenia (low white cell count) requiring the treatment to be stopped in uncommon ~2% of patients. There is a mean decrease in the white cell count of less than 15% from baseline in almost all patients on teriflunomide; this has no clinical implications. The antiviral effects of Teri are not via the immune system per se, but due to the mode of action of the drug in the virally infected cells.

  • ProfG, do I understand correctly that lymphocytes replenish to a lower baseline following treatment with Alemtuzumab, resulting in low level lymphopenia? My levels are still low two years post infusions.
    Is it fair to assume this makes us more vulnerable to COVID19?

    • No, not necessarily; lower than baseline still means you are competent. The normal range of lymphocyte counts is very wide; somebody with a count of 1.1 can be as immunocompetent as some with a count of 2.7. The absolute numbers are a poor proxy for immune competence; it is only below 0.8 that immune competency is likely to become a problem.

    • Please remember that only about 2% of your total lymphocytes are found in the peripheral blood. Immune function is a qualitative rather quantitative function; the real question is can I mount an immune response to a new virus when I get infected? The answer is you are more likely to do so post-reconstitution after alemtuzumab than you are on fingolimod, for example.

  • Tedros Adhanom Ghebreyesus
    @DrTedros
    ·
    29 Feb
    If you are 60+, or have an underlying condition like cardiovascular disease, a respiratory condition or diabetes, you have a higher risk of developing severe #COVID19. Try to avoid crowded areas, or places where you might interact with people who are sick. #coronavirus

    I also assume that we should all continue to attend our medical appointments and for the monthly screening for Alemtuzumab, only taking into account this advice from the WHO Director General as far as is possible.

    As part of the government plans for dealing with COVID19 do you see a point where hospitals will be locked down for all but essential treatment?

    No doubt you’re going to be inundated with replies/questions to this post ProfG. My appreciation once again for providing another invaluable post and for any responses from you or the rest of the Bart’s team.

    • Policy changes like this maybe national. regional or local. I suggest you contact your local team if you are worried. As an example, We can always move pharmacovigilance (monthly blood and urine monitoring) into the community if necessary. Please note ‘if necessary’ at the moment it is not.

  • thanks for this incredibly helpful update. I was nust wondering if there’s any indication on when we will know if the virus is neurotropic (and the implications/risks for patients on natalizumab)?

  • In a previous post you said you thought COVID19 was unlikely to be neurotropic. Do you still think this? When will there be a clear idea?

    • Horrible thing to say, but we will have to wait for a Tysabri treated patient to be infected and see what happens to them for a clear answer.

      A matter of weeks I would say….Darwinian random selection at its best.

  • Do you think its appropriate to call this a pandemic when the governing bodies haven’t declared it so one yet?

    I just am trying to gauge how much of this whole thing is being over hyped and causing those of us with medical conditions such as MS, and other vulnerable people to unduly OVER worry.

    Its good to be precautious and take care but this whole situation is basically mass panic, being led by the media headlines.. not to say its not serious, but I think the reality and severity of the issue is hard to really gauge.

    or should all of us on tysabri or other drugs in your list self isolate until we hear more?

    I maintain a good level of hygiene and I don’t recall the last time I even had the flu,,… 10 years ago!?

    • Following a significant rise in the number of UK cases over the weekend – with 12 more confirmed in England and another in Scotland – Public Health England’s medical director, Paul Cosford, said to prepare for more widespread infection in the UK.
      He said: “If we do get widespread transmission in the UK the most important thing for us now is to make sure we’re prepared in every possible way to slow the spread of infection so the intensity reduces and we’re able to deal with the consequences.
      “We’re not there yet but we’ve got to be prepared for it.”

    • Pandemic is the worldwide spread of a new disease. An influenza pandemic occurs when a new influenza virus emerges and spreads around the world, and most people do not have immunity. Viruses that have caused past pandemics typically originated from animal influenza viruses.

      Pandemic epidemic it’s all a word, air travel ensures globalisation

    • Re: “Do you think it’s appropriate to call this a pandemic when the governing bodies haven’t declared it so one yet?”

      Yes. The WHO is trying to manage the press, etc. It is a pandemic and it was several week’s ago. They should call a spade a spade.

      I ran a medical epidemiology unit for 12 months, whilst I was conscripted to the South African Defence Force. This was early in my medical career. I wrote a very influential report on the HIV pandemic and how it was going to affect South Africa; the report was sadly buried and the rest is history. I still have all the epidemiological knowledge I learnt back then to apply to the current situation and I can tell you this is a pandemic. The only continent not to have been affected is Antarctica.

      • thank you Professor

        I didn’t mean to come across badly, as I highly respect this site and all of the work you guys do… I was just trying to gauge how much the issue versus media press is.

        as someone on tysabri, I am quit worried and hope we know something soon re the risk levels.

        appreciate the response and your commitment.

      • Pan(dem)ic is an unfortunate word. I think sometimes people see only the first and last syllables, and therefore public-health authorities are instinctively slow to use it.

    • I’m due for my second Ocrevus infusion on Friday and live in NYC having no choice to take crowded subways to work everyday (I’m not in a situation to work remotely and self-isolate), I’ve been anxiety ridden all week and of course taking the typical precautionary methods, I’m going to still go to my Ocrevus infusion appointment Friday because I had new and enhanced lesions a month or so back – which prompted my Dr. to start me on a new treatment, so risking disease progression is a real possibility. I do wish there was more information on the potential impact for MS patients concerning the virus, esp those on the more immuno-compromised treatments like Ocrevus, Tysabri, etc but it seems like there are so many unknowns that even Doctors aren’t sure yet.

  • Thank you so much Pr Giovannoni. This is very helpful.
    I would just like to ask if we need to take more extra measures at this stage ?
    Other than the hand washing what can we do? And when does it become necessary to self quarantine ?

  • If I am on Ocrevus (last infusion 20th Feb) should I avoid travel from UK to Mexico for a holiday later this week for 3 weeks? I still want to go and Mexico is not high risk (currently) but worried about about risk if I do catch it from travel?

  • Sorry English is not my first language, so I want to make it clear, how novice tecfidera is exactly?
    My bad luck I was using beta interferon months ago but had to change to tecfidera

  • Sorry about my bad English but I want to make it clear, how harmful tecfidera is exactly
    I was using beta interferon months ago but had to change it t

    • I make the point that Tecfidera/DMF is only a mild immunosuppressant provided you don’t have lymphopaenia, therefore the risks will lower than with the other immunosuppressive agents. Please note that it is a bit of lottery when you get an infection how you respond to it; no DMT is safe nor is life. Sadly normal young people with no apparent risk factors have developed severe, and rare in cases fatal, complications of COVID-19 infections.

      • Thank you so much Prof G for discussing this subject.
        Can I please ask about TECFIDERA?
        I had stopped treatment (due to severe GI upset as was taking without substantial food) in early Jan, when coronavirus reports started coming through. I was reluctant to restart it as I thought I would wait to see how the disease developed. I have always had a lower end of normal lymphocyte count.
        At my lowest on TECFIDERA it was 0.6. It was stopped for a couple of weeks and then restarted. I seem to have an average at 0.8 whilst on treatment.
        I only restarted bd dosing last Friday and I had a blood test on Monday where my lymphocytes were 1.2.
        Should I stop my TECFIDERA until the coronavirus outbreak is over?
        Should I perhaps take a lower dose (od rather than bd)?
        Am I at a greater risk of the sequelae related to an overactive immune system if I get coronavirus but am not on a dmt?

        Feel like us patients are between a rock and a hard place.

        • Where is the ABN and the voice of ECTRIMS when you need them.
          Sorry we can’t give personal advice.

          The bid is because the drug doesn’t hang round long enough.

          You make a good point about overactive immune system. There is some information to suggest the fatal issues may relate to an over active immune system. This was a problem with SARS and 1918 flu

  • Post year two cladribine since January, would it be worth taking anti virals to protect while travelling? Than you

    • Unfortunately, we don’t have antivirals for COVID-19. All the work that should have been done in this area was closed down after SARS and MERS settled down. A big mistake and shows that a market-driven model of antivirals, antibiotics and vaccines doesn’t necessarily work. Saying this Trump is proposing to cut the NIH, CDCs and overseas aid budgets. COVID-19 is one argument against budget cuts and a call to all countries to share the workload. Public health needs public funding. Do you agree?

      • I apologise I had a complete misunderstanding of anti vitals … I wrongly assumed they’d increase your own ability to fight any infection while lymphocytes were low. I didn’t realise they were specific to each virus. My mistake. There should never be cuts, globally shared knowledge, shared research is a priority to get answers faster. Thank you for the reply.

    • Same here Melly. I stopped tysabri because I got PML, I’m just recovering at the mo. Took my first week of Cladribine this week and the nurse called me yesterday to say they will not be giving me a 2nd dose. I have to take some precautionary measures (avoid gatherings, using public transport) but I don’t know how long I’m at risk for. So many questions unanswered!

  • Hi Prof G!

    I don’t quite understand the statement about the teriflunomide. Are you saying a person using teriflunomide as their treatment are actually at the same risks then normal people? Or, are you saying it could be even better because it could protect the patients from even getting the coronavirus?

    Thank you in advance, I wanted to understand it clearly since my first language is not english!

    • ProfG thinks teriflunomide is and anti-viral and so could be useful against COVID-19. However there is proof either way that it is or isn’t of value

  • I am seriously considering not taking my 2nd week of pills due in a fortnight. It’s my 1st year of Cladribine. The logic/assumptions being that:

    1. if I have only done the 1st week, my lymphocyte count will not drop as low as if I’d done the 2nd week (knowing also that it will not be effective against my MS as I am not following dosing protocol)

    2. I will be able to take another DMD soon, such as Copaxone/Brabio, whilst I wait out a vaccine or for the virus to become less deadly with time so that I can start Cladribine treatment again.

    3. It will be safe for me to have the Corona virus vaccine in a few months time, given that I am only taking the 1st week of Cladribine so not following the full dosing protocol for the 1st (and probably 2nd) year.

    I’m VERY aware that stopping after just wk 1 of yr 1 Cladribine treatment is a scenario that has just never been run. I would be INCREDIBLY interested to know whether the above 3 assumptions sound reasonable, or now that I’ve already taken the 1st week, that’s it for me, my immune system will still bottom out at a low enough lymphocyte count to put me at risk of complications from Coronavirus, and so I might as well take the 2nd week – that there is no turning back.

    Thank you in advance for any thoughts.

    • Melly,
      I’m with you. I’ve cancelled my ocrevus infusion which i was supposed to get tomorrow. Its 7 months since my last one so no way am I prepared to have another dose right now when I could go onto a holding DMT and wait for the vaccine. I’m far more worried about coronavirus than MS at the moment and my HCP is unavailable as usual

      • make sure you speak to a HCP. This is not howI wanted to test the idea that extended dosing interval treatment with ocrelizumab could have merit,

      • Thanks Debs. We are in similar situation with having very specific dosing schedules = deadlines for us to make the call with very limited information. The unavailability of HCPs with neurology depts at breaking point is going to be a big factor I think in MSers feeling they have to take these decisions into their own hands…and some making very uninformed choices, based solely on Tabloid press. Far far far from ideal. Plus HCP recommendations are going to change day by day as this situation unfolds.

        As an HCP, how do you get the word out to all your patients every time the course of action changes in light of new Corona info, and in a timely fashion? And how do you then move all your patients onto other DMDs, again in a timely fashion? I feel for HCPs as well as MSers in this impossible situation.

    • If you have taken cladribine in the first year the T drop by 30-40% but in year 2 this would be 60-70% your B cells will drop by 70% in first month, a little more to 80% by month 2. In month 1 the drop of CD4 was about 20% and less for CD8.

      • Mousedoc thanks so much for replying. Rest assured I am trying to get in touch with my HCP before this decision must be made…sadly our neuro unit is already massively understaffed so I may well not get a response let alone a conversation with my/a neuro before my deadline.

        Stats on T and B cell numbers is exactly what I’m needing, so thank you for sharing some – are you able to share author, title, year of paper and I can take a look? From your stats on B cells, not taking year 2 makes a difference, v useful information. But it’s not possible to infer whether missing the 2nd month of pills at yr 1 will make a positive difference to the level of immune system we’re left with. (T numbers not provided, B cell drop from 70-80% cannot be teased out – no comparison of what drop would be anyway if do not take 2nd month of pills).

        Issue after that is whether you can take another DMD like Glatirimer Acetate after pausing Cladribine mid-way through treatment (in my case, after taking just wk1 of yr 1). Or whether DMDs cannot be taken for the next 2-4 years given the 1st week of pills have been taken.

        I’m assuming it has to be non-immune-suppressing if you’re mid-way through an IRT…?.

        If that is the case, the nasty decision of dealing with risk of MS relapse whilst on no DMDs vs risk of death with corona virus + no beds/broken NHS will be what I, and others mid-way through an IRT must wrestle with.

        Thank you again Mouse Doc.

        • Author …Herrod S 2017. Search schmierer and Herrod it’s online.
          Also look Baker MSARDS 2018 cladribine in title.
          For B cells they recover by end of year 1. Memory B are depleted but you are interested in new B cells. Drug is gone in 24h new cells should be able to generate. Monthly doses have been looked at with subcutaneous clad.

          People have switched from to other DMT after cladribine so there is not a bar to further treatments.

          It has to be non immunosuppressive…..I don’t buy this concept it is is immunosuppressing if it is immunomodulation, it is just that they are weak immunosuppressive.

          I’m sorry not to be of more help.

          Corona virus is ten- twenty times the death risk of flu. How did you reconcile that choice.

          • 10/20 death risk of flu? Wowzers. That sounds worse than I thought.
            Think I might be driven to stocking up on some Heinz tinned soups ready to hide away soon… Trying not to get freaked about it is becoming harder as the days unfold? The daily mail was making me laugh, but now admittedly I’m a bit scared to go near my colleagues who travel to italy.. It’s wearing away at my rational brain..

          • Absolutely fantastic, thanks Mouse Doc, this info is gold. I owe you at least 5 coffees if I bump into you at the next research day.

            

‘Reconciling that choice’ – worst case scenario if cannot take a DMD whilst waiting for IRT to get out of system – from your info this is not the case which is fantastic news. 



            Corona virus scenario: Based on:

            
1. stats such as these coming from ‘international experts’ recruited by WHO, who visited China https://www.reddit.com/r/China_Flu/comments/fbt49e/the_who_sent_25_international_experts_to_china/?utm_medium=android_app&utm_source=share

            

2. doubts as to how the NHS could possibly deal with a large influx of people requiring respiratory help given it’s breaking at the seams already and that the NHS Taskforce itself is not immune to coming down with the virus. https://www.theguardian.com/society/2020/mar/02/coronavirus-just-eight-out-of-1600-doctors-in-poll-say-nhs-is-ready

            

3. An amateur’s best guess that being immune suppressed to the extent of Alem or Clad during the initial phase might match roughly the vulnerability levels of the elderly population to the virus. Though as we know there are apparently healthy individuals that have succumbed to the virus and it appears to be more than just a handful.

            

I would be super happy to be proved wrong/over-reacting, to read any good quality evidence that counters this. I was happily taking the mick out of The Daily Mail’s scaremongering a few weeks ago.

    • Ocrelizumab is given a 600 mg the amount Half’s every month but it is still depleting at 20mg. The range of time for CD19 to normalise is 7 months to three and a half years based on phase II data. Therefore I suspect.you have low B cell count at 5 months. The question is what is the major immune cell important for Corona virus if it is antibody, I think your ability to make new antibody is compromised, if it is CD8 T cell there maybe nothing diminished

  • COVID-19 is considered a pandemic by Australian authorities (with some pretty grim / speculative predictions). A local doctor just tested positive so I’m expecting a cluster around where we live. Scary given my wife is 9 months post her first 5 alemtuzumab infusions. Her Lymphocytes are bottom range of normal. So, not as immunocompromised as she was (loved seeing those 0 results). Basic precautions we are taking include – wash hands, wash benchtops regularly with hot soapy water, stay away from people with coughs / colds, avoid crowds (shopping centres etc) unless necessary, and work from home whenever possible.

    Stay safe people and be sensible if you are immunocompromised.

    • I’m 10 months out from my first 5– will she go ahead in 3 months with the next set? That’s what I’m struggling with. 😕

    • Saw my neuro (in major MS clinic in Australia) on Friday, about 5 weeks away from taking year 2 of Cladribine. Lymphocytes low normal at the moment. Neuro said he expects full on outbreak of COVID19 in Australia in 5-6 weeks (which is what I already thought, just after Easter). He didn’t suggest delaying second round, just said to try to avoid crowded places (happy to avoid shopping centres, but not much chance of avoiding work), not to travel anywhere if I could avoid it, don’t travel to places with COVID19 travel warning, and to avoid international hubs like Singapore, Bangkok, Dubai etc if I have to travel. Anyway will see what happens but all set to take year 2 Mavenclad in 5 weeks.

        • Fortunately I walk to work so public transport for me mostly isn’t isn’t a problem, but I work at a university, so lots of people who travel from all areas of the city using public transport everyday.

  • First COVID-19 case just confirmed near me—and I have my second round of Lemtrada scheduled for May. My MS is aggressive, so not being on a DMT is quite dangerous… but apparently so is being on a DMT these days. I tried to get an appointment with my neurologist but there’s nothing available until June. Here’s my question: If I go ahead with the Lemtrada and then do get COVID-19, are there any therapies that “undo” the Lemtrada and tell my body to start producing immune cells?

    If this were you, would you go ahead?

    • Bone marrow transplant but this probably not going to be faster and have you got stem cells frozen. For certain cells one can use growth factors like GM-CSF.
      Sorry I can’t give personal advice

  • It seems that the serious cases are due to an over reactive immune response to the virus i.e. ARDS and cytokine storm. Do you think it’s possible that we may find that some of the DMTs may actually be protective from serious COVID?

    In particular the data on S1P modulators and cytokines storm/ards in influenza is interesting. It’s also interesting that gilenya is currently being studied for COVID ards.

  • Hi

    I have just stopped injecting with Copaxone and am due to start Ocrevus in less than 3 weeks time as my disability is progressing and I had a new lesion on last Mri.

    Should I start infusion and if I do, should I stay off work afterwards- I work in a busy area of Birmingham New Street and deal with a large number of people in my job.

    I feel very unsure what to do. From reading this blog I think I should delay but I’m also worried about going to work and travelling on public transport/dealing with public even if I don’t have infusion.

    Any advice gratefully accepted!

  • I stopped taking Fingolimod approximately 3 years ago….. will my immune system (and ability to resist/fight infection) have returned to ‘normal’ by now?

    • Latest advice here.
      “It is important to note that fingolimod (brand name: Gilenya) 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.”
      If you stopped taking it 3 years ago your immune function should be normal, depending of course on whether you have switched to another DMT subsequently.

      • Thank you, that’s good to know that my immune system should be back to normal now. No, not on any DMDs any more as I’m now secondary progressive.

        • https://riderinstitute.org/discovery/

          I posted about this broad spectrum antiviral called DRACO a few years back relative to the proposition that MS was engendered by a retrovirus. I was reminded of this potential treatment upon the covid-19 outbreak. Sadly, like other treatments, the researcher was unable to get funding to follow through with this idea. Unfortunately, we are now all paying the price for shortsightedness.

  • Alemtuzumab and Covid 19

    Hi, Completed round 2 of Lemtrada last month and due to have my first bloods tomorrow. At this stage last year my lymphocyte count was at zero. What advice do you have to try to stay Covid 19 free?!

    I work in a Hospital although not in a Clinical area and am signed off until tomorrow at present although no doubt this will be extended

    • Just had email from my MS Nurse, tomorrow’s first review and bloods cancelled and review will be done via telephone due to my risk from Covid 19!!

  • Hi there. First of all, thank you for a good blog! I’m on Mavenclad, finished round 2 of year 1 in end of January. My lymphocyte count is at 0.6. Is my immune competency compromised? I live in Iceland where the Corona virus is starting to spread quite fast… I am a bit worried. Do you have any advice for me?

  • I had my second cycle of lemtrada 6 weeks ago. I am an anaesthetist in a tertiary cardiac and respiratory centre (provides ECMO). I returned back to work 2 days ago, with amended duties of avoiding emergency work and potential infective cases. However, given how the pandemic is progressing in the UK, plans are escalating to potentially cancel elective work and have all anaesthetists on the frontline for critical care. My lymphocyte count is currently 0.2. I have been advised to not attend work by my colleagues due to my increased risk of infection, as intubation of covid-19 patients is high risk. Is there any evidence out there on what lymphocyte count would be acceptable to return back to work with the ongoing pandemic? thank you

    • This is what ProfG says in his post on 11th March: DMT use during the COVID 19 epidemic needs to be more pragmatic. Though he’s not relating this to work/work as a HCP.
      Hope it’s helpful and I’d like to add my heartfelt appreciation to you and all HCPs for what you will provide in the coming weeks and months – beyond all that you already do!

      As a rough guide if the total lymphocyte count is above 0.8 x 109/L or 800/mm3 they should be able to deal with viral infections reasonably well provided they have not other comorbidities and are relatively young.

      In addition in his YouTube vid COVID 19, Ms Drugs & risks the American neurologist Aaron Boster says the absolute lymphocyte level ideally above 1

  • I read on another blog that TECFIDERA has potential scope in the treatment of COVID19. Do you think this is feasible?
    This is the link
    https://blogs.sciencemag.org/pipeline/archives/2020/01/27/coronavirus

    Somebody wrote:
    “What about non-specific covalent inhibition of the Coronavirus cysteine protease (3C-like protease) for only a couple of days (when the viral load increases). E.g. the cysteine may be covalently inactivated with dimethyl-fumarate (DMF) : up to ~500mg/day oral dose seems to be allowed hitting all sorts of cysteines : (registered as Tecfidera; MS patients can take it for much longer periods). Hard for the virus to become resistant: no specificity pockets would be occupied using DMF and Cyst mutation is suicide. Do not expect severe immunosuppression using DMF for only a couple of days”

    • I had to have a look but did see the comments, but it seems like comment on viral resistance.

      I am more interested in learning about anti-IL-6 receptor used in NMO as it seems to be helping to deal with the cytokine storm and is helping the severely affected people

  • I read on another blog that TECFIDERA has potential scope in the treatment of COVID19. Do you think this is feasible?
    This is the link

    Somebody wrote:
    “What about non-specific covalent inhibition of the Coronavirus cysteine protease (3C-like protease) for only a couple of days (when the viral load increases). E.g. the cysteine may be covalently inactivated with dimethyl-fumarate (DMF) : up to ~500mg/day oral dose seems to be allowed hitting all sorts of cysteines : (registered as Tecfidera; MS patients can take it for much longer periods). Hard for the virus to become resistant: no specificity pockets would be occupied using DMF and Cyst mutation is suicide. Do not expect severe immunosuppression using DMF for only a couple of days”

    • I doubt you will get severe anything in a couple of day…send a link and we can have a look at the science
      Send a link.

  • Hi Prof G,
    I am on fingolimod. Slightly worried that this leaves us users of the drug more at risk of being infected by Covid-19 and may also mean the symptoms are worse/more complicated. When should we start to self isolate to avoid getting infected (uk based)?
    Any advice would be much appreciated. Thanks

      • Hoping that the NHS letters that are being sent out next week to those most vulnerable will include those of us with MS and who are immunocompromised. Heard a question yesterday on the BBC from a PwMS who is clearly without any idea as to how to respond to COVID-19 and somehow I think that one of the letters to all who receive or have received immunosuppressant DMTs will help.

  • I have MS and have numbness in both arms and just this year my right foot/leg went numb, I am not on any medication yet, am I at high risk? My step dad got the flu last year so badly we thought he might die, he had to go to the hospital, he got me sick too but I was barely ill and better in days, makes me wonder if I’m better off not being on MS treatment with covid going around.

  • I would love to get your thoughts on the clinical trial for primary progressive multiple sclerosis using hydroxychloroquine. Are you familiar with this trial? Thank you.

    My name is Scott and I have primary progressive multiple sclerosis. I am 53 years old.

    • Nice Owl video but I removed.

      A phase II futility trial of Hydroxychloroquine in primary progressive MS. results of the first stage of the trial
      ECTRIMS Online Library. Koch M. 09/11/19; 279000; P640.
      The trial is too small to say anything except perhaps the drug is safe in MS, which is important if this becomes a treatment

      • Hello. 47yo, male, diagnosed with RRMS at 31, was on Avonex then on yoga , asyntomatic for 12 years, then progressive disability (limping). On Dimethil Fumarate since 2 years, my lymphocites dropped to 11% on a percentage range, then the whole WBC count went down, my doc put me on half a dose (one pill per day) one year ago, but lymphocites are not increasing. I need to travel about 200 days a year for work, I live in Asia travel a lot to Africa and Europe. Thank God now everything is blocked with flights but eventually after the countries I travel to peak in contagion, they will start opening the flights again and I will need to get on the road. Considering my higher risk of exposure, would it be wise to take a break from TECFIDERA. Currently I have residual disability but no active lesions in MRI.

    • I don’t even have a neurologist atm, right as they were getting ready to start my treatment the dr.s wife who is the head receptionist flipped out on me so bad that I had to file a grievance against her and the med group Im in keeps referring me back to him, Im 45 have had numbness going on 11yrs now, the neurologist never gave me treatment options and told me not to read side effects, if I can get my insurance to get me a neurologist I will ask about treatment options like what you suggested or maybe ldn

  • Hello! Could you recommend some articles on MS medications for beginners? I would like to understand the options for RRMS, but mostly encounter articles that assume you know what they are talking about. There are so many options now and studies that I feel I will never be current. The same holds true for exercise, diet, you name it. It’s information overload. Thank you : )

    • You are indeed right. when I was diagnosed 20 years ago only interferons were there and MRIs were done on those funny translucent sheets. Please check out the web site of your national MS society, as not all options might be available in your country. The sad reality is there is still a poor understanding of the root causes (probably stress messing up your immune system), and the best they can do so far is giving you meds that interfere with the functioning of your immune system in the hope it leaves your nervous system alone (in the process resulting in multiple side effects and risks). If you believe in allopathic doctors you should talk to a neurologist, they will probably give you a couple of options. You should also take responsibility of your own body and not expect progress if you do not alter your lifestyle (lower stress, maybe change jobs, fix up your relationships, better diet, meditate, take it easy, strengthen your resilience and willpower, understand this condition is going trough you to teach you something, and understand what it is). Good luck.

  • Should patients on Fingolimod be maintained above a slightly higher minimum ALC during the Covid19 pandemic, perhaps around 0.3-0.4, instead of 0.2 ? I thought it would be logical, but reading further I am not sure. Thanks. Neurologist in South Africa

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