I am getting a continuous stream of questions about MS and COVID-19 infection. The following is an example of the kind of questions that are being asked.
- Does MS increase my chance of getting COVID-19 infection?
- Does MS increase my chance of getting severe COVID-19 infection?
- Does COVID-19 cause MS to relapse?
- Should I self-isolate because I have MS?
- Should I stop my DMT if I become infected with COVID-19?
- Can you recommend a good source of information to keep me updated on COVID-19 infection and MS?
- Should I avoid attending my hospital appointments?
- What about my blood/urine monitoring; should I suspend monitoring during the epidemic?
- Are there any people with MS who have had COVID-19 infection?
- What is a safe lymphocyte count?
- Am I at increased risk because I am on DMT x, y or z?
We are providing answers piecemeal and I get a sense we need to collate them somewhere.
Do you think we should collate these questions into a separate COVID-19 microsite, blog post or blog page? What is the most accessible and searchable format for people with MS? I am aware that a blog creates problems.
Post-script – 18 March 2020
In response to the demand, I am in the process of creating additional pages to our microsite MS-SELFIE, which refers to MS self-management. The Q&A will be in the form of typical questions and anonymised real-life case scenarios. I think the latter is very important in illustrating the subtleties and complexities of clinical practice.
CoI: multiple
Yes please! C-19/MS micro site would be very much appreciated-Thank you
Yes please that would be so useful to so many
It would be great to have answers to those questions you posted. This platform works for me.
This blog is accessible to me. I’d love to hear the answers to those questions you just posted.
Micro site would be great – and thanks for all your information which has been excellent and reassuring.
Yes please.
Yes, a microsite or blog would be helpful. I have more questions: Should I delay my next Ocrelizumab infusion? What is the risk of developing antibodies to Ocrelizumab if I delay for 1, 2, 3 or 4 months? How does this change depending on the number of infusions I’ve had? What’s my balance of risks if I continue without a break? How does my location or profession influence this? How likely is it that CoVID19 is going to mutate into CoVID20a, b, c… and render any delay without merit? It’s worth generating a decision tree covering all of the DMDs and considering if there are any things like zinc supplements or Vitamin C that can be taken to help.
Risk of antibodies probably very low.
Delaying infusion there are numerous posts about the science behind this and number of infusions
Location go to the John Hopkins website
Profession if you meet more people in close contact risk will increase
CovID 19 will stay Covid 19 it is a COVID virus from 2019 and it has already mutated.
Zinc…Vitamin C make sure you are replete
Whats the longest you can delay for?
Agree with everyone on microsite. Very useful and thanks again for all that everyone at Barts does!
I would have expected the answers to be on one of the MS charity’s website, but they’re not. So any kind of place would help. One thing lacking in the Coronavirus advice is how important physio exercise is during the expected 12 weeks of social distancing. We will all be in trouble if we do nothing.
Organisations like the MS Society and MS Trust don’t seem to be very good at dealing with uncertainty and Prof G et al appears to be much better at expressing this. This is what they do all the time clinically and it carries across beautifully into this blog. It’s refreshing to see directional change as new evidence comes to light too, rather than trying always to make the evidence fit the theory. The MS charities generally don’t run a story until it’s the finished article.
This might help: https://www.mstrust.org.uk/life-ms/exercise
Grateful to be able to refer to this blog for guidance and not just at the present time. Blog post would be fine.
Yes blog post will be fine, for answering the questions. Many thanks.
Hi. As someone who has only recently been diagnosed with MS (albeit with good prognosis) I think it would be useful. However, I am also a realist so trying to collate all questions or at least the themes will be a huge task. That said if something can be done that isn’t onerous it would be great.
Yes please a micro site would be useful. I would like to know, would you recommend deferring a change in DMT at this time? I have 1 new lesion in 12mths and am currently taking Copaxone. Due to also having Crohn’s disease, Tysabri is recommended.
Yes please. I have asked some of these to my ms nurse specialist and just get a generic government advice response…which is not in any way helpful.
Hey I was on plegridy and have just finished a week ago. Am stopping due to side effects and awaiting aubagio.
5 years dx rr ms edss 0
My understanding is it’s very small on the immunosuppressive stakes.
Want to know am I ok to volunteer as an allied health professional? Ie as much as the next person?
In Ireland we can volunteer and be redeployed!
Thanks in advance
New bold tab at the top of this blog? Or one of those trailing messages that goes across the blog page telling you where to find the covid info?
I agree that a bold tab at the top of this site would be good – a section just for COVID19. Your work for pwMS in providing this site is really appreciated and incredibly helpful. Thank you.
Microsite pls.
YES please. Anything for these answers. I’ve been worried about the risk of relapse from covid 19 myself, especislly because there is no healthcare system to get treatment in that awful scenario.
But in the interest of time may I suggest a dedicated twitter handle if that is too much for your team?
Yes please , that would be very helpful. You are my trusted source and I’ve wanted answers to all of those questions and more !
Thank you for all your work on this so far thanks 🙏
yes!!! It’s a frightening time , and this would be so helpful. Thank you:-)
#MSCOVID19
Thank you for caring. Yes please.
#COVID19MS
Yes please – putting them all in one place that gets updated as more is known and the advice changes would be great. Thanks for what you do always but especially now!
Yes Please
I would be so incredibly grateful for this.
Thank you so much for thinking of us during this time.
If to the questions posted would be very useful
Also
Should treatment with Ocrelizumab be suspended at this time?
This platform works for me but equally a
C19 microsite would be very useful
Thank you
Thank you so much for amazing work you’re doing for MS patients!
That would be really helpful…thank you for all the information so far, it’s really appreciated.
Yes Please! Though as an IT iterate I’d like to access via this Blog please.
I ‘d also ask that you please include where there might be a difference of expert opinion or centre practice. Using myself as an example: watch Aaron Boster vid about COVID-19 and he says ideally total lymphocytes level above one. You helpfully explain that level above 0.8 should be ok, with need to take into account age and comorbidities
MS nurse phoned me on the 12th to instruct me to ask my GP if they can undertake my monthly screening. She confirmed this via email: ‘your lymphocytes count is still below normal range which could potentially put you at a higher risk of coronavirus if exposed to such. Although we are still seeing patients in clinic and the phlebotomy department, if we could minimise the attendance of immunocompromised patients, this could be beneficial.’ (my count is below 0.8 at 28 months post Alem)
I wish there were more words in the English language for thank you. It is astounding that you’re looking to provide this support to PwMS when you’re also contending with seismic changes at work!
So Thank You!
More info the better but can you please ensure it is easy to search by keywords please
See that little [PML] direct link on the top of this blog? there’s plenty of space for a C19 quick access q&a I say….
So many question by so many different profiles of people on different DMTs – challenging will be in sorting/grouping questions and answers in a an easy way from the point of view of a reader.
Tony
Collated in a blog post would be good. This could always be edited as things unfold
Even if Ocrevus is OK in the short term, I am thinking longer term when I’ll want to have a vaccine shot. (and I have SPMS so my options right now are few) When the vaccine comes and this all settles down, I’ll want to get it and be confident that I can go back out and mingle as I always have. So,????
Also, is there a better way to say covid-19, corona, “the virus”, C19, etc, so we are all talking the same way. Thanks
The vaccine studies in ocrelizumab started vaccination at 3 months. The data may emerge that ocrelizumab holiday is safe and so maybe at 6 months your vaccine responses go up again. In the vaccine study 75% made vaccined response to new antigen and so maybe we can get this to 100% and once you long-lived plasma cells have formed they are formed and ocrleizumab isn’t going to touch them for some time.
Gavin I think having somewhere to put our questions and have someone answer them would be extremely helpful and would ease a lot of stress from all our minds. Especially regarding our treatments and all the what if’s that we keep asking ourselves.
I’d appreciate reading the answers to these questions, anyway you think you can best publish them