Life after Lockdown with MS

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Is it time to hit the pubs, give hugs and bin masks? Five experts answer.

After a year of lockdown, it looks like ‘normality’ is returning thanks to the rollout of the COVID-19 vaccine.

For an overwhelming percentage of the population, this is hugely reassuring. And for those people with multiple sclerosis (MS) – doubly so. 

We know our disease makes us more susceptible to infections. Research has also shown people with advanced MS with underlying health conditions are at greater risk of being hospitalised or worse – if they get the coronavirus.

But for people on certain drugs – like B-cell depleters Ocrevus (ocrelizumab), Rituxin (rituximab) and Kesimpta (ofatumumab) and S1P modulators like Gilenya (fingolimod), Mayzent (siponimod), Zeposia (ozanimod), Ponvory (ponesimod) it’s not quite time to celebrate.

That’s because people on these disease modifying therapies (DMTs) might have a reduced response to the vaccine. This could happen because vaccines work by triggering an immune response and DMTs work by dampening down the immune system,  according to the MS Society.

So what does this mean for the more than half a million people globally on these drugs (me included)?* How will we know if the vaccine has given us some – if any – protection against the virus?

And no, getting an antibody test is not the answer, says Gavin Giovannoni, Professor of Neurology, Queen Mary University, London. Most diagnostic COVID-19 antibody tests don’t detect antibodies to the spike protein used in the current vaccines and they don’t measure protective T-cells – another key part of the immune system.

Now what? Are we condemned to watch from afar as friends and family embrace their new post-lockdown lives: hugging (remember that?), squeezing into crowded restaurants and pubs or jetting off to faraway places?

Not quite, agree MS neurologists. “Don’t assume you are completely unprotected after vaccination,” says Erin Longbrake, Assistant Professor of Neurology at Yale University. “Some early data suggests the T-cells are working just fine and are creating protection from the virus. Giovannoni adds that people on these DMTs – post-vaccine – will have less chance of getting severe COVID-19.

Both point out a number of studies are being carried out exploring how effective certain vaccines are at protecting people on a range of MS drug therapies. Later in the year, the results should start trickling in.

But what about while we wait? How do we stay safe while negotiating life in an increasingly vaccinated society? And what other people with MS – on DMTs or not? What can and can’t they do? 

In hopes of guidance, I asked five neurologists from countries at various stages of vaccination – from Israel (63% – received at least one dose), UK (53%), United States (46%) to Canada (41%) – for their advice. 

The overall message: be cautious, follow your area’s guidance for protection and make sure those around you get vaccinated especially if you are vulnerable.

As for hugs: be selective and make sure “it’s the more formal English-style,” says Klaus Schmierer, Professor of Neurology, Blizard Institute, Queen Mary University, London. “And no snogging!” 

Some answers have been edited. 

Do you tell your MS patients to get a COVID-19 vaccine – even if they are on immuno-suppressant DMT’s? 

Yes, I encourage them to get the vaccine and tell them it is safe and effective. If they are on immunosuppressant DMTs, I tell them the vaccine timing may have to be modified, but this is not a safety issue but something to optimise vaccine efficacy – Ron Milo, Chairman, Department of Neurology, Barzilai Medical Center, Ashkelon and the Ben-Gurion University of the Negev, Israel 

Yes – Rachel Farrell, Consultant Neurologist, Queen Square, London

Yes – Klaus Schmierer, Professor of Neurology, Blizard Institute, Queen Mary University, London

Yes, we do. Our general philosophy is that some DMTs may decrease the immune response, but a decreased response is still better than no response! – Jiwon Oh, clinical neurologist, Medical Director of the Barlo MS Program at St Michael’s Hospital, University of Toronto

Yes – Erin Longbrake, Assistant Professor of Neurology at Yale University

What advice would you give to your unvaccinated MS patients? Should they still wear masks in public places, wash their hands and continue to social distance? 

I explore with them the reasons they are unvaccinated as by now everyone with MS in the UK should have been offered a vaccine. If vaccine hesitant rather than anti-vax, I discuss with them that while they may not be at high risk of COVID-19, they can still transmit it and high levels of transmission in a community leads to new variants – Farrell

Get vaccinated! We should all continue to adhere to the rules for the time being since transmission remains a possibility, even if the individual is protected from disease – Schmierer

Unvaccinated patients should continue to follow these restrictions – Longbrake

In general, we advise patients to follow general public health precautions in their regions – Oh

We still recommend to continue the usual protection measures (masks, social distancing, hygiene), especially in close spaces and particularly if they are unvaccinated – Milo

What about going back to work, or the gym/cinema?

In general, we advise patients to follow all public health precautions in their regions specific to these populations. There really isn’t a one-size-fits-all recommendation as the risk of COVID-19 is different in different regions. For patients on certain DMTs that may have greater risk, we advise they may want to be more cautious – Oh

Unvaccinated patients should continue to use caution in public settings. I’d recommend continued masking – Longbrake

With social activities, people need to make these decisions themselves as to what their individual risk and the Covid-19 safe measures at the facility. Work is a different matter and needs to be negotiated with the employer taking into account various risks. If a person can reasonably do their work remotely and is at high risk than continuing to work from home is a reasonable request – Farrell

I do recommend my patients during the current (much better) situation in Israel to go back to work, gym… normal life, while still practicing the recommended precautions. I believe 70-75% of the population being vaccinated – “Herd immunity” – may provide significant protection for unvaccinated people – Milo

Going back to work will be a very individual decision, depending on the cumulative risk based on circumstances. Individual and environmental factors all play into this – Schmierer

What about those with MS who have been fully vaccinated? Can they return to the office, gym/cinema? Are they safe to go into restaurants, pubs, bars – where they take off their masks off to eat/drink?

They certainly should be safer, both as individuals and for others. However, there is still uncertainty around transmission and the effect of DMT (B-cell depleters and fingolimod) on efficacy of immunisation – calls for ongoing caution – Schmierer

I think they can cautiously return to daily activities. Vaccinated patients can begin to ease up, particularly when outdoors or within a group consisting solely of vaccinated individuals. Their level of comfort may depend on what MS medication they are on – Longbrake

Vaccination is not 100% and thus care needs to be taken. Know who you are sitting with in restaurants when in close contact and without masks to help make that decision. Ventilation is key – ask for a table by a window and when warmer – opt for outdoor dining – Farrell

Again, it really depends on how public health recommendations evolve based on region, etc.  With certain DMTs, there may be a decreased immune response, so it may be important to be a bit more cautious – Oh

Basically yes. Vaccinated people may still infect others (albeit to a probably lesser degree than unvaccinated ones), and should try to avoid close contact with unvaccinated people in order to protect them – Milo

Your patients on immunosuppressant treatments like Ocrevus – what advice would you give them?

I’m advising my patients on B-cell depletion drugs to consider themselves as having some, but possibly not full, protection from COVID-19 and behave accordingly.  I’m not advising routine re-vaccination (unless as part of a research trial) at this point, although that might change as new data becomes available – Longbrake

Get vaccinated and continue general safety measures until we know more about their efficacy of their response to vaccination – Schmierer

They need to observe social distancing, masks and hand washing per guidelines. Their response to vaccine might be attenuated and more data is required to comment on this and the need for boosters – Farrell

I also tell these patients that they may need a third booster vaccine in the future, if further studies indicate so – Milo

With these DMTs, it is very possible that the immune response to the COVID vaccine is decreased – we just don’t know by how much, and what this means from a functional standpoint.  As such, we recommend patients get vaccinated, but suggest they may want to be a bit more cautious as our knowledge evolves around COVID-19, and as we continue to learn to manage its risk – Oh

*In 2019, Novartis, the makers of Gilenya, said the drug has been used by more than 275,000 patients worldwide. Last month Roche announced over 200,000 MS patients have been treated with Ocrevus globally. 

Rachel Horne is a journalist with MS. @RachelHorne19

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Rachel Horne

14 comments

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  • If you’re traveling abroad, also remember that in most other countries, even in Europe, the numbers vaccinated will be far lower than in the UK.

    In Spain, for example, we’re still vaccinating the over 60’s. A decision was made at government level that PwMS have the same risk from Covid-19 as the background population. They also included patients on B-cell depletion therapies in that group. Therefore, Spanish-resident PwMS are likely to remain unvaccinated for most of the summer and younger PwMS may not even be vaccinated this year.

    I don’t know what can be done about it other than mentioning it on forums like this and hoping that word gets out and suitable pressure is applied.

    The only exception to the above is Catalunya where they’ve taken things into their own hands and ensured that PwMS are prioritised. The rest of us are being left in limbo, particularly as government support for those whose income has been reduced by the pandemic ends at the end of May 2021.

    Spanish-resident PwMS of working age are effectively left to choose whether they wish to starve or get infected.

    • Thank you v much for letting us know about the situation in Spain for PwMS. It was tough to decide which countries to cover – re vax rate, infection rates, etc. Also the situation is so fluid and changing. In the UK, the Indian variant may put us at risk (again). Stay safe Simon.

    • Is the government response because the incidence of MS in Spain is lower than in the UK? (Or it used to be – my knowledge is not recent). I remember back in 2005, on a visit two years into diagnosis and my first DMT, when I got talking to a Spanish GP friend. I was pretty staggered when he admitted he had never even heard there were drugs available to treat MS and he carefully noted down the CRAB names. More recently, Spanish friends tell me I shouldn’t be hurrying back and they despair of the vaccine situation, made worse where they live because anyone of influence is able to jump the queue.

      • I think it might be because the UK is not in the EU, so vaccinations in the UK were approved and were are able to start sooner.

        • Which of course was all entirely possible if the UK was still a member of the EU. It’s amazing how these myths perpetuate.

          • I’m sure MD1 did a post on it, stating it was one of the very few positives of Brexit.

          • Not sure that’s true but as I said before both the rapid approval of the vaccines and as far as I’m aware, the purchase of the vaccines, would have been in no way impeded by still being a member of the EU despite Brexiter politicians telling you different and who have such a great track record on veracity. So, still absolutely no benefit accruing from leaving the EU and asn we can see clearly now (thank you Johnny Nash), quite a few negatives.

  • The further factor I have to consider when weighing up risks (am on fingolimod) is the harm I cause myself by anxiety. Whether this is an added extra of MS or part of my psychological make-up I don’t know . What I do know is how I felt just after Christmas when I had inadvertently exposed myself to Covid risk. I had a fourteen day wait before I was reassured that my contact had had a negative test. A week later came the news that her test had been faulty and that a second test had been positive. She was ill for a week, but (I’m cutting short the saga..) it transpired that she had caught Covid AFTER the contact with me so I was in the clear. The whole episode brought on symptoms, leaving me sleep-deprived for three weeks and utterly desperate. It did clarify my attitude to risk, however. I now accept that this kind of upset to my mental state is far, far worse than living for the time being in restricted circumstances. All decisions are set within this framework and I have come to appreciate fully what peace of mind actually means.

    • I understand very much what you are saying. I believe most of us with MS have been under added anxiety for the past 14 months plus. I know I have. Also it is about – as we look forward – making a slew of choices which involve balancing mental health vs risk. For example, I certainly will keep on wearing my mask in public spaces (like public transport) for probably far longer than most people.

  • Let me be clear- I’m not going to make any friends with this post:

    OK, so I was a licensed PhD “Social” Psychologist, as well as a college instructor, here in The US prior to going on Betaseron for 25 years and then a quick stint on Ocrevus which I ended (Fri the 13th of March), as the pandemic was revving up in Europe. I had gone on SSDI (Social Security Disability Insurance) nearly 20 years ago (one of many stories in itself). So I have changed my name here, from TomA to TomPhD.

    I have been following this issue (of DMTs and Vaccine Readiness) for over a year now, and frankly, find it fascinating (people’s response to valid threat to their well being)…

    To begin, just the limited response to this thus far, tells me something. Is it denial? Don’t know. Could be. Who wants to admit they are in a precarious situation? It is easier to point at things like “timing”, and “partial protection”, and “anything is better than nothing”… than admit things are not looking favorable (or at least “questionable”), which all pwMS don’t want to hear, about almost anything. Just look at the posts on some of the Ocrevus and other MS blogs here in The US. Is it denial? Don’t know. I ponder… How long did it take for smokers to conclude that smoking was bad for their health, back in the 60’’s, 70’s and 80’s? Same phenomenon? Don’t know. Same risk profile? I don’t know. Am I a quack, a paranoid person or an Anti-Vaxxer? No.

    The preparation for Ms. Horne’s essay here should also not be discounted, nor should the subject matter. From experience, I know that preparing people with a good mindset for an effective interview is not simple as people react to plans of being quoted, in different ways, which must be addressed tactfully prior to the interview to get a good response. Then you have to pick the answers amongst lots of data and transcribe them (sometimes but not in this case, anonymously). It often goes beyond the work of coding and analyzing multi-factor data for “objective” research. And the (extended) topic of this is very, HUGELY, important- will our DMTs screw up our lives psychologically, beyond what we accept from them physically?

    And finally, let me restate a point I made in a previous post: What are people on Ocrevus going to do when they go back to work? Wear a mask when everyone else isn’t wearing a mask? Be instantly stereotyped into any particular group which is not accurate (and be acted against accordingly)? Or maybe join the anti-vaxxer crowd (as masks have been proven not to work anyway), and just not wear a mask? People will be unable to tell the difference. Since the new CDC guidelines (here in The US last week), the s*&t is hitting the fan on this and related issues, and those on immunotherapies are being lumped into the group called “unvaxxed”. The solution is “get vaxxed”. See ABC “This Week” from Sunday the 16th. No wiggle room. Check it out.

    • Please adjust my occupational description above to include “clinical”, as in: licensed PhD “Social” and Clinical Psychologist, as well as a college instructor

  • What working health, safety or social distancing suggestions, if any, can you give family members of PWMS who are now expected to go back to work and get back into the thick of things? Simply, stated all members of my family and my work group are vaccinated, yet I expect that many others I encounter are not; any thoughts on how to manage the variable risk I encounter are welcomed. My plan is to continue to follow universal health and safety practices until we get a handle if the vaccine has given us some – if any – protection against the virus? Lastly, your work is valued by many; thank you and yours for all you do when others are not watching!

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