Yesterday I had the experience of a patient with highly active MS pull out of being treated with ocrelizumab (Ocrevus) because of concerns around being infected with the coronavirus COVID19. I suspect this will be the first of many patients with multiple sclerosis to do so.
It is clear that COVID19 epidemic is now a pandemic, i.e. it has involved enough continents and countries to be considered a major and very serious global health emergency. This was predicted to happen many weeks ago. Several basic epidemiological factors indicated that this would occur:
- A long asymptomatic period during which infected people shed the virus and are infectious
- Asymptomatic shedders who don’t get ill
- An estimated R0 (r-zero) of 3-5, which is an estimate of how many people or contacts that an infected person infects
- The identification of superspreaders; individuals who seem to be able to infect a large number of people
- Excessive national and international travel; the initial epidemic in Wuhan happened to coincide with the largest annual human migration of people (see graph below). Approximately 400 million people migrate in relation to the Chinese New Year and a lot of that migration was international, which explains why the virus has spread so rapidly to other countries
- Ubiquitous air travel, involving large airports and hubs, which has the ability to spread viruses very rapidly to people on the same aircraft and then to disperse them to all corners of the world before they get symptomatic disease
- COVID19 is also a new human pathogen having jumped to humans from animals and as a result of this, we have no pre-existing herd immunity that could buffer or reduce its rate of spread.
You will find more infographics at Statista
At the moment the mortality or death rate form the virus is approximately 2%, or 1 in 50, with the majority of deaths affecting the elderly or infirm. The mortality is likely to fall as case ascertainment and reporting gets better. This occurs because the less ill get counted into the so-called denominator. At a population level, this death rate has major implications for healthcare systems. The majority of the deaths are due to pneumonia and these sicker patients require intensive care support. All countries simply don’t have enough ITU beds to support large numbers of ventilated patients. In fact, Britain has too few ITU beds already, without having to deal with the coronavirus pandemic.
What to look out for?
Coronavirus infection presents very non-specifically with flu-like symptoms, i.e. fever, a cough, or difficulty breathing. Most cases are mild. Those who have died in often have pre-existing health conditions and this is where the problem lies for pwMS. If you have advanced MS, a history of recurrent chest infections and/or you are on immunosuppressive therapies you are considered at high risk of complications from coronavirus infection. The latter risk extends to other infections as well, which is why, for example, it is our policy to recommend the annual flu vaccine to all of our patients with MS.
What to do?
If you have symptoms following travel to a high-risk area or after coming into contact with someone who has had coronavirus infection you should contact the NHS hotline so that appropriate samples can be submitted to Public Health England for testing. In addition, you will need to self-isolate or be treated in isolation.
I would not recommend stopping your disease-modifying therapy. The immunosuppression associated with MS DMTs is relatively mild-moderate and hence most pwMS can handle infections relatively well. The exception being alemtuzumab (Lemtrada), and possibly cladribine (Mavenclad), during the lymphocyte depletion phase. Cladribine is less of a problem as T-cells are on average depleted by ~50%, whereas with alemtuzumab the T- and B-cell depletion is typically greater than 90%. The good thing about IRTs (immune reconstitution therapies) is that once your immune systems have reconstituted they are competent to deal with infections.
Although fingolimod (Gilenya) causes lymphopaenia it is not an absolute lymphopaenia as lymphocytes are sequestered or trapped in lymph nodes. Therefore, pwMS on fingolimod can in general deal with viral infections, although they have more frequent and possibly more severe infections. This also applies to other S1P modulators (siponimod, ponesimod, ozanimod, etc.), in other words it is a class effect.
Viral response on anti-CD20 therapies (rituximab, ocrelizumab and ofatumumab) should also be maintained, but maybe blunted as B-cell and antibody responses may be necessary to help clear the virus. The infections that people on anti-CD20 therapies have a problem with are encapsulated bacteria (pneumococcus, meningococcus, Haemophilus, etc.).
Coronaviruses can rarely cause and encephalitis, typically in severely immunocompromised patients. This would indicate that as a class coronaviruses are neurotropic. I am not aware of any data on whether or not COVID19 causes encephalitis. If COVID19 is neurotropic encephalitis would be a risk for people on natalizumab (Tysabri). As natalizumab blocks immune surveillance of the CNS, a person on natalizumab who develops a COVID19 encephalitis would be in danger of succumbing to the infection. The latter is analogous to PML, which is also viral encephalitis.
DMF (Tecfidera) is only mildly immunosuppressive and in my opinion, is unlikely to be a major worry in the event of you acquiring a COVID19 infection. The one caveat being patients on DMF with a significant lymphopaenia, i.e. with a total lymphocyte count of less than 0.8 x 109/L or 800/mm3.
Teriflunomide (Aubagio), glatiramer acetate (Copaxone) and interferon beta (Betaferon, Avonex, Rebif, Plegridy) are not immunosuppressive agents and hence should not increase your chances of having a severe COVID19 infection.
Whilst the risk of COVID19 infection to the general public, and hence pwMS, is very low I would not recommend changing your DMT or avoiding starting any planned infusions. I would, however, recommend that if you are immunosuppressive to be extra-vigilant about hygiene (handwashing, etc.) and to avoid travelling to high-risk areas. If you are travelling through high-risk areas, for example, China, Hong Kong or Singapore you need to be more vigilant.
I am also getting asked for advice about face masks. The evidence that cheap surgical masks work for coronaviruses is limited. Coronaviruses are spread in a different way to the flu virus. Coronaviruses are not aerosolized in the same way as the flu virus and hence are not breathed in, but are rather spread by droplets. These stick to surfaces and hence the need to wash your hands. So masks are likely to work both ways for coronavirus, where they are not very effective for flu. One thing masks do is they make you wearer change your behaviour in other ways.
If you are travelling to a high-risk area and are going to use a face mask can I suggest using a good quality one, i.e. an FFP3 mask that filters out small particulate matter? These work for larger organisms such as TB and may help reduce transmission of COVID19. It is important that you have the masks fitted and you know how to use them properly. Within the NHS the latter is typically done by a healthcare professional with the necessary training on how to assess adequate mask fitting and usage.
As we are not infectious disease experts or virologists I would recommend following the NHS’ and Public Health England’s website for up to date advice.
What did I recommend for my patient above?
As there was no way he was going to be treated with ocrelizumab I ended-up recommending teriflunomide. The advantage of teriflunomide is that it is not immunosuppressive and has pan anti-viral activity against many viruses.
Clearly the advice given above applies to pwMS living in the UK. In COVID19 hotspots, e.g. China, it may be safer to delay treatment with immunosuppressive therapies until the epidemic has passed and there is herd immunity to protect you. In addition, a COVID19 vaccine may become available within the next 6-12 months. Therefore, it may be worthwhile initially choosing an immunomodulatory DMT that won’t interfere with future vaccine responses.
P.S. (27-Feb-2020): Please be aware that the advice above may be time-limited. Once the coronavirus becomes established in the community and person-to-person spread becomes more common and the source of infection can’t be traced, which is happening in China and Italy at the moment, then the public health advice may change. In this situation reverse quarantine may be necessary, i.e. to ask high-risk individuals to self-isolate themselves so as not expose themselves to the virus. At the moment this is not necessary in the UK as all the cases have been linked to a clearly identifiable source.
CoI: multiple
In Italy 10 people died with coronavirus this year (mainly elderly andsick patients)
Also this year 300 people died in Italy form the seasonal flu
as of the last update, which changes in 20 mins, there are 366 deaths.
Still so complacent Mr Fernando?
Interesting to see patient fears delaying treatment. As a patient I’m much more frightened of a disabling relapse which is more likely than death from covid19.
Assume the reco for patients already on ocrelizumab is stay on it. Any special precautions if the virus does come to your area? Is there any reason to be concerned about this illness triggering true relapse like we know flu does? Vaccine may not be an option if already started.
I travelled through Singapore last week, spending just over 10 hours there. My mum gave me a mask, she only had one. But I didn’t bother to wear it – it wouldn’t last ten hours anyway. I have a little shortness of breath which can probably be put down to recovering from an ultra marathon.
I’m on DMF, my lymphocytes have never been good though! I didn’t see my last blood test results (December). Usually between 0.4 and 0.9, but I’ve been healthier this winter than last, so maybe they are on the up. Just had another blood test so hopefully I’ll see the results of this.
I’m also keeping an eye on my MCV which is rising and no one can come up with an explanation. Folate and B12 fine. A doctor friend has suggested foot strike anaemia.
https://www.google.com/url?sa=t&source=web&cd=10&ved=2ahUKEwjg6ZWUwO_nAhXkQkEAHaczDAsQFjAJegQIBhAB&url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpubmed%2F22056965&usg=AOvVaw3hKKhZw9Nvpd8w7Ia9wdMY
In this paper you and colleagues confirm those who receive Alemtuzumab are left with long standing lymphopenia, and whilst the conclusion is that ‘was not associated with an increased risk of opportunistic infection’ to what extent does this take account of a novel virus?
Based on basic principles people who have had chemotherapy, HSCT, alemtuzumab or alemtuzumab-like therapies and have recovered their total lymphocyte counts to above 800 (grade 1) or 1,000 (grade 0) don’t seem to be at increased risk of common viral infections or complications of these common viral infections. The latter refers to coronaviruses in general. The problem with COVID19 is that it has just jumped from animals to humans and is hence likely to be more virulent than other human coronaviruses. However, as time passes it may mutate to become less virulent. Evolution of the viruses favours more infective (easier to transmit), but less virulent strains (less likely to kill) to persist and spread.
Again thanks ProfG for this clarification in reply to Anon. This has reminded me that I googled lymphopenia after reading you say that those of us who receive Alemtuzumab will live with low level lymphopenia. I found this Danish study from 2018 with the conclusion that lymphopenia makes you more at risk of infection and dying of infection. As a consequence I decided to live as someone more vulnerable to infections: all simple things such as became a good hand washer and don’t hug and kiss Hello during the flu season each year. As there’s been emphasis on airports being a hotbed for potential spread of COVID19 and your last point yesterday about travel, it now seems pertinent to be a tad more cautious around those who’ve traveled abroad – including my son and husband currently in Peru for 3 weeks!
https://www.google.com/url?sa=t&source=web&cd=16&ved=2ahUKEwj0gcfAoPHnAhVLSRUIHUgXC8YQFjAPegQIBRAH&url=https%3A%2F%2Fwww.ncbi.nlm.nih.gov%2Fpmc%2Farticles%2FPMC6211632%2F&usg=AOvVaw2Q9qaZqHYHIonumUlP0ZTL
Thanks for addressing this ProfG as I’m confident it must be playing on a lot of PwMS minds. If they themselves are not unduly concerned, I can personally testify that family and friends are, especially when they hear reference to those who are immunosuppressed being vulnerable.
It’s fair to say though isn’t it, that those with comorbities should be more vigilant.
There’s also the legitimate concern that other care provision will be undermined if (when) the NHS has to deal with the pandemic.
I recall a post you did recommending the flu vaccination after a young woman sadly having got the flu, developed and died of pneumonia, I think after receiving Alemtuzumab. With a COVID19 vaccine a good year or more away worries, even anxiety is not groundless. I found myself that I was jittery going to a London centre for my monthly bloods this morning.
I’m sorry that the situation is negatively impacting on peoples DMT choices and hope others don’t simply stop taking their DMTs or fail to attend medical appointments.
Stay calm, be sensible, be vigilant and carry-on as usual until further notice 😉
Surely regardless of DMT, if you have MS catching the Coronavirus is a risk. Dreading going to the hospital tomorrow picked up the Swine in 2009 and I hadn’t been anywhere else, despite following all the guideline.
Yes, being a human living on planet earth puts you at risk of COVID19 infection. The question we are dealing with is what will happen to you if you get infected with COVID19 and are a specific DMT.
I understand that a face mask does very little or nothing to prevent getting infected, but if you are already infected (maybe unknowingly), does a face mask help protect those around you?
I think this is why you often see people in Japan with facemasks, not for their own protection, but for their colleagues’. I often wish we could copy that aspect of their culture, but is there any evidence for our against it?
Yes, face masks protect the people around you and yourself. Coronaviruses are different from the flu. My understanding is that they are not aerosolized in the same way as the flu virus and hence are not breathed in, but are rather spread by droplets. These stick to surfaces and hence the need to wash your hands. So masks are likely to work both ways for coronavirus. But again there are masks and there are masks. One thing masks do is make you #ThinkVirus and hence change your behaviour in other ways.
Prof Julian Gold who is an infectious disease expert thinks it is better to wear masks in high-risk environments than not to wear them. However, he paraphrased his comment that you need to use a good quality mask and that the other hygiene behaviours are more important than masks. I hope this advice helps.
Yes, it does help, thanks
Any kind of mask is working, if it keeps you from touching nose and mouth after touching infekcted areas. Even a Mickey Mouse mask will have effect. 😉
The British are sponges when it comes to absorbing other peoples behaviours, so it would not surprise me if this happens
What I have heard is that unless masks are properly fitted, viral particles get through gaps. They’re worn by professionals for not longer than 30 mins to protect patients. If someone is wearing a mask all day, it will be moist from breath, and useless. They may be useful to restrict spread of virus-containing droplets from an infected individual. So members of the public buying these is generally a nonsense that reduces supply to those who really need them and use them properly. Just wash your hands.
The paper surgical masks are limited use and they’re the ones that have to be thrown away once they become moist and humid from where. The respirator in 95 can be worn multiple times as long as they still Maintain their integrity. It’s important to know the difference between the paper surgical mask which will not help against the virus and the end 95 respirator mask
yes not all masks are created equally
Sensible, rational advice on mask use from WHO:
https://www.who.int/emergencies/diseases/novel-coronavirus-2019/advice-for-public/when-and-how-to-use-masks
Now if.only.i could by a mask and hand wash I,LD be laughing
timely post
I am currently on tysabri and due to switch to cladribine in the near future.. I have been wondering whether there is additional risk and whether delaying the cladribine would be sensible.
however after reading that you suggest those of us on Tysabri may also be at risk, now even more unclear which is the best approach.
based in the UK
The COVID19 epidemic in the UK is still in its infancy and may be nipped in the bud. I think the risk is low, but things may change over the next few weeks to months. I also think the risk of severe viral infection on cladribine will be low to moderate as it only depletes lymphocytes by about 50%. The natalizumab risk will only become a risk if COVID19 is neurotropic; we will know this once the Chinese publish their clinical data. In general, coronaviruses don’t cause encephalitis or meningitis so I anticipate the risk on natalizumab from COVID19 to be very low.
I suggest you discuss things with your HCPs.
https://www.google.com/url?sa=t&source=web&cd=1&ved=2ahUKEwiMidWtz-_nAhWMRMAKHdLXAHYQFjAAegQIBRAC&url=https%3A%2F%2Fwww.theatlantic.com%2Fhealth%2Farchive%2F2020%2F02%2Fcovid-vaccine%2F607000%2F&usg=AOvVaw0aZz0tTm3OKwMdA0JbI9gJ
Interesting read on COVID19
Re The majority of the deaths are due to pneumonia
Overhead a conversation today about people paying for pneumonia vaccination before flying
🤔 paranoid overkill?
Probably better not to fly, save carbon emissions too 🙂😉
Re The majority of the deaths are due to pneumonia
Apologies, my comment yesterday about pneumonia vaccination made no sense. I overheard (not overhead) a serious discussion amongst people wanting this before travelling to the far east. My reaction (with emojis) was that to eliminate risk of secondary bacterial pneumonia infection amongst healthy people was probably excessive and if that concerned then far better not to travel at all.
This has been a very informative post and extremely helpful to lots of pwMS taking dmt. Did not intend to make light of it.
Some of pneumonia that people with coronavirus get will be secondary bacterial pneumonia on top of viral pneumonia. This is particularly common in people in ITU on a ventilator. Having the Pneumovax may help prevent at least one class of organisms (Pneumococcus) causing secondary bacterial pneumonia.
Thank you Pr Giovannoni
This is very helpful
Had round 2 Lemtrada last week, my neuro said if only people were as obsessed with hand hygiene, covering their mouths when they cough or sneeze and stayed home from work when they are sick, then we could get ahead of this. I have been somewhat obsessed about hand hygiene since first round and always have a pocket hand sanitiser with me. I am not unduly worried and certainly had no worries about have my second round of Lemtrada
Thank you for the information.
Had my first lot of ocrelizumab in January and found your information hopeful re a vaccine being developed. Hand hygiene ie soap and water or alternatively hand gel should be second nature.
Prof G are you advising your patients not to travel?
Yes and no. If you have MS and are on an immunosuppressive DMT, why would you want to take a chance and travel to or through a coronavirus hot spot? If you have to travel for an important reason, work, family, etc. then do so with care.
The lock-downs in China, Italy, etc. is aimed at trying to protect the general public so as to flatten the peak of the epidemic. By doing this healthcare resources will cope and not be overwhelmed by very ill people needing hospital admission and ITU.
Does this make sense?
Thanks
pw MS?
People with MS, a preferred term according to focus group 😉
Thank you for information.
I am aware that medicated MSers are OK taking antivirals but was wondering if the current DMTs would negatively interact with chloroquine?
https://www.nature.com/articles/s41422-020-0282-0
Tony
Not that I am aware of; it is frequently recommended as an anti-malarial. You can check one of the drug-drug interaction sites. Let me know if you come up with anything.
Thank you for your post with answers. Happy to read that Teriflunmide / Aubagio is not an immunosupressive agent. But Aubagio does lower the amount of certain white blood cells. If the amount of leukocytes is very low (on the lower limit), is the chance of getting a severe COVID-19 infection then increased?
I have been on Gilenya for last 5 years with no relapses. But I am worried because even though I am taking low dosage of Gilenya, my Lymphocyte is constantly very low (at 0.2). I had few severe infections and fever in winter time, I guess because of that.
Now I am really worried if my weak immune system can handle the new corona risk. Would it be a better choice for me to stop Gilenya temporarily? Or is there a way to increase my Lymphocyte count?
Please consult your MS specialist first before you do anything as there is a significant risk of a rebound relapse if you cease taking Gilenya without transitioning to something else.
Thanks a lot for your kind response. With my case of constantly very low number of Lymphocyte (0.2). I will discuss with my doctor shifting to a new medicine that does not suppress my immune system so much (like Aubagio). In order to reduce Corona and flue infection risk. Is there and specific drug that you would generally recommend for my case?
Best Regards,
Very informative.
Very interesting read just what I needed to read before my trip to Bali in late March
Very interesting read
Interestingly, Gilenya is also being tested to prevent one’s immune system from overshooting at the later stage of a COVID-19 infection. https://clinicaltrials.gov/ct2/show/NCT04280588
Suppose that works. Would it be advantageous for pwMS to have taken it all along? Get it more easily but die less easily? Or would it only work if you start taking it while you are infected? (Sorry if I am asking you to speculate on this)
Hello Prof. G., (and boy would it be wonderful if you could respond): I’m here in the US where things are just getting started with Corona. I have been wrestling with this question for the past couple of weeks: I’ve had MS since 1990, on Betaseron ’95 to ’19, and am about to hit 12 months with two 1/2 doses of Ocrevus. So next Friday will be time for another dose (full). I’m in relative good shape MS wise, became secondary progressive (inactive type) perhaps around 2016 (given mild declines). No MRI activity since 2002. Don’t seem to be deteriorating recently. I am a past smoker, lungs are OK (but not like a baby).
I read Ocrevus people get infected a bit more, and have a less positive response from vaccines.
Would holding off on my infusion next week, for a few months until we know more about what is going on, make any sense, or would doing so prevent me in any way from continuing later at a better time? I know you can’t tell me what to do. But if you were me, what would you do? I’d rather stumble a bit more (if indeed that’s what happens), than be six feet under. I still have stuff to do.
I have always had MS expert doctors and am in touch with mine. I am hoping to get an independent opinion from someone versed in all of this.
Thank you so much. Tom from US.
ProfG cannot give specific advice, he may give general advice but your locate may give you higher or lower risks. If people stop store some serum if possible it could be useful for science.
This is so hard. Thank you for the reply above Mousedoctor, but I don’t know what it means regarding serum. I’d donate my blood to science but no one is asking for it.
This blog is the only one I’ve found, and since it is trying to shed light on a very good and timely question, I’ll think out loud regarding ME, and perhaps it might help others in their decision on what to do. I’ll disclose which way I am leaning at the end. I have 3 days to decide on whether to get my next Ocrevus infusion, next Friday.
It’s basically a question of weighing two opposing choices in order to reach one outcome- maintaining physical ability with MS. (My 30 year history is above.) I don’t want to be a “poster child” for the “perfect storm” of a recent Ocrevus plus Corona combination. The question is, should I be infused with a full dose of Ocrevus at the exact same time as the introduction of a new and potentially deadly (for immune compromised people) virus, into society? I think it is not a question of IF, but rather WHEN, I will come in contact with Corona. Will I have “good luck”? What can I do to increase the odds in my favor when I come in contact with the virus?
On one side: What I read regarding Ocrevus (from other sources) is that it significantly increases the odds of contracting upper and lower respiratory tract infections (“statistically significant”, that is.) It significantly decreases the effectiveness of vaccines. According to Prof. G above, when taking Ocrevus, viral immune response can be “blunted”, and people can have a problem with pneumococcus. I had meningitis when I was a kid (similar to pneumococcus). Five percent of Corona infections are very serious, and they happen to be people with weakened immune function.
On the other side: I think I know approximately what my odds are with MS (32 years in), as to the threat to my physical ability if I am not actively being treated with a DMT. I could get slightly worse (stumble a bit more, have urgency a bit more) over the course of 4 to 6 months, perhaps, with “bad luck”. None of this is certain. Except…
Since death is so extreme, as compared to the many MS related deficits I have and have experienced, I am 80% confident (as of this moment) that I will postpone my Ocrevus treatment until there is a more clear path to follow. There are plenty of pwMS, recently infused with Ocrevus, who can’t undo it, and I’ll watch for their experiences. I don’t want to be a trend setter in the wrong direction on this one. My last question is, can you postpone an infusion of Ocrevus? I’ll call Ocrevus today.
I would be pleased to hear any thoughts by anyone, regarding my thoughts above. Good “luck” to everyone “across the pond”, and everywhere else.
OK I won’t explain the reason for blood test…it is a science question.
Now is the time that the neuros doing the ocrelizumab phase II should be looking at themselves and asking why didn’t we investigate the requirement of 6 monthly dosing, they had 8-10years to look.
Thank u for replying x
A really, really,, sharp web site. Thank you.
Goodness this is exactly what I’m going through. My husband and I both have a MS and had our first half dose of Ocrevus February 19. Today we were supposed to go in for the second half dose. Husband got sick over the weekend and I played it up a bit because I didn’t think we should get the second half dose while being sick and also with this coronavirus outbreak. After the first half dose February 19, I was very short of breath. I have been more sedentary since December and experience very mild short of breath occasionally. But a few days after the Ocrevus infusion the shortness of breath was frequent and more intense Getting up from a chair taking a few steps I felt like I was out of breath and having to take rapid deep breath’s before I could continue. My neurologist did not tell us any details about Ocrevus side effects and that’s how he is. So I did not attribute the shortness of breath to the infusion and thought it was just my usual sedentary lifestyle. But I did more research and discovered the upper and lower respiratory problems that can arise from Ocrevus. I just sent a message yesterday to the doctors nurse that I was not interested in Continuing with the Ocrevus. I had,OK results with Tecfidera but experienced major hair loss. That’s why I was put on Ocrevus. But if shortness of breath, even short-lived, and cold sores are part of the treatment, that I’m not interested. And then on top of everything knowing that this is killing my immune system and putting me at risk for coronavirus is a no brainer. After sending my concern to the nurse yesterday, she responded today with no concern and simply said I need to come in and talk to the doctor about other treatments. Would’ve been nice if she had sounded concerned that I was having short of breath side effects. I told my husband that I am fairly certain that we will not die from MS in the next six months. However, the coronavirus and how it affects people with compromised systems is too much of a risk for me to have my immune system wiped out by Ocrevus now. And husband’s work place hasn’t even mentioned the word virus. When husband brought it up to supervisor the supervisor shrugged it off and said ”more people die from the flu. If and when it becames like China they might consider something”. He can’t lose his job so I’m sitting here super stressed but he will catch it, bring it home and then I will get it and we will have very bad reactions.
Hello Prof G, my name is Janet and I live in Lancashire UK. I have RRMS which was rapidly evolving,
I’m on Tysabri and am I immunosuppressed with it?
Many thanks Janet
As well as the post ProfG has done on coronavirus and DMTS you may find useful Janet today’s vid on YouTube about all the different MS treatments and the risks regarding COVID19 by Aaron Boster.
Thank u and I will x
It seems that young children are not / may not be suffering such severe symptoms with COVID-19? Chicken Pox is similar in that regard then. Why do young people – who surely have less developed immune systems than adults – have a relatively easy ride with some viruses?
Sometimes it is the immune system that cause the problem a vigourous immune response causes a cytokine storm and it is this that causes alot of the problems
Thank you Prof G. Very good and helpful advice. I have relapsing remitting MS and have been on fingolimod for a few years. I tend to be better than the rest of my family at fighting off bugs. I take high doses of vitamin C and of course vitamin D as well as a multitude of other vits and minerals. I shall carry on with the fingolimod.
re Prof G
“THIS ADVICE MAY BE TIME LIMITED”
Does that still stand? What is your opinion now?
thanks
Excellent article, thank you. Here’s one for you – I’m a 36yo RRMS patient who is on Rituximab (similar to Ocrevus) and, after a lot of uncertainty, was diagnosed with hypogammaglobulinemia because of a) a 2 year long sinus infection that I couldn’t shake b) failing immunity tests against at least pneumococcus and haemophilus, and c) continued failure to build antibodies against these bacteria after vaccination. I currently get monthly IVIG to compensate for the low IgG, but it is useless against a new virus where community immunity has not been established and pooled into the IgG I am getting. I also work in a very populated environment in NYC. I’ve just switched to working at home but I do have young children in school so I feel like I could be exposed to it at any moment. Sounds like I am the definition of someone who is at high risk here. I am working with my MS doc and immunologist but the number of unknowns related to this exact situation is staggering. They don’t seem to be as alarmed as I am which is reassuring (I think.. but maybe not?). My next Rituxan dose is next week and I pushed for, and my doctor agreed, to start testing for B cell re-population and delay the next dose until B cells started coming back. You touched on this topic below but I wanted to dig a little deeper – do you know if B cells (or really antibodies) are required to fight a viral infection? Do people have other mechanisms to fight a virus outside of antibodies? If not.. it feels like someone in my situation should be isolated for a long time, even from my wife, kids, older parents, and job. Especially considering that the kids could have it and be asymptomatic or I could catch it from my wife days before she experiences a symptom. That would be devastating but the alternative sounds worse. Any general thoughts / advice for people in a similar situation?
Antibodies are great at preventing infection as they can mop up any virus floating around or if the particles are on the surface of cells they can be destroyed by antibodies,but once in a cell, we have T cells called CD8 T cells that are specialised in killing virally infected cells. If the education section you can see why this happenes as it is based on the target of CD8 and how they get loaded with protein bits from inside the cell. So when you vaccinate you normally monitor antibody formation as success. Antibodies are good at getting rid of bacterial infections maybe part of the reason for sinus infection. Low immunoglobulin levels can be a consequence of repeated and continual depletion. I suspect your B cells will not be coming back quickly even if you take a break, send them the paper for todays posts…they may not have seen it
I had my Ocrevus infusion about 3 weeks ago and I am a little concerned what is your advice
hello my name is Esther Halpin I am an MS patient and I live with a health worker in ******** hospital am I at a higher risk of contracting the virus by living with this health worker.
Health workers at the front line are often at more risk of infection, and I know how a few cases where they have been infected by the people they hoping to help meaning self isolation for 2 weeks. There is evidence of this from China and indeed the Doctor who raise the alarm became infected. I am not sure we are protecting those at the front line enough.
Hi Prof,
I was diagnosed with RRMS in 2013 and I have been on Tecfidera since 2014.
I recognise that having my MS diagnosis places me into the “at risk” groups ‘increased risk of severe illness from Covid-19; my MS has however been stable since my last relapse in 2013 and my 3 monthly bloods have always been fine.
I have extensive Respiratory Physiotherapy, ITU specific and HDU experience, both prior and post developing RRMS in 2013. I am also fully aware of using Personal Protective Equipment and have recently been successfully fit tested in the likelihood of treating Covid-19 patients.
Since being diagnosed with RRMS I have been actively involved in delivering active Respiratory Physiotherapy in treating flu patients but also ARDS patients. I absolutely recognise that Covid-19 is like nothing any of us have ever encountered before; I also recognise the increased risk that I am taking in volunteering to be potentially exposed to Covid-19 with an underlying RRMS diagnosis.
It’s likely that owing to my RRMS, I will be redeployed away from patient contact at the very moment when I’m going to be needed on the frontline. Is there any evidence that I could use that would enable me to remain treating my patients? Thank you.