The MSIF has just updated its COVID-19 International MS guidelines. What do they know that we don’t?
Advice regarding disease-modifying therapies for MS
Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. Some MS medications might increase the likelihood of developing complications from a COVID-19 infection but this risk needs to be balanced with the risks of stopping or delaying treatment. We recommend that:
- People with MS currently taking DMTs continue with their treatment.
- People who develop symptoms of COVID-19 or test positive for the infection discuss their MS therapies with their MS care provider or another health care professional who is familiar with their care.
- Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region. The following information should be considered during decision-making:
- Interferons and glatiramer acetate are unlikely to impact negatively on COVID-19 severity. There is some preliminary evidence that interferons may reduce the need for hospitalisation due to COVID-19.
- The limited evidence available suggests that people with MS taking dimethyl fumarate, teriflunomide, fingolimod and siponimod do not have an increased risk of more severe COVID-19 symptoms or death.
- Therapies that target CD20 – ocrelizumab and rituximab – may be linked to an increased chance of being admitted to hospital or requiring intensive care treatment due to COVID-19. This preliminary finding requires further investigation.
- More data on the use of natalizumab, alemtuzumab and cladribine during the COVID-19 pandemic are required to make any assessment of their safety.
- People with MS who are currently taking anti-CD20 therapies (ocrelizumab, rituximab, ofatumumab or ublituximab) and are living in a community with a COVID-19 outbreak should be extra vigilant and may want to consider self-isolation to reduce their risk of infection.
- People with MS who are currently taking alemtuzumab or cladribine and are living in a community with a COVID-19 outbreak should discuss their current lymphocyte counts with their healthcare professional. If their counts are considered to be low they should isolate as much as possible to reduce their risk.
Recommendations on delaying second or further doses of alemtuzumab, cladribine, ocrelizumab and rituximab due to the COVID-19 outbreak differ between countries. People who take these medications and are due for the next dose should consult their healthcare professional about the risks and benefits of postponing treatment.
CoI: multiple
‘Reasons to be fearful, 1, 2, 3….’
As a pwMS on ocrelizumab this update from MSIF doesn’t provide any real clarity on how to conduct my life. ‘Carry on with your DMT, but maybe don’t, COVID19 could be worse for you, but we’re not sure yet, think about staying in, or not….’ Aside from perhaps New Zealander’s, is *anyone* living in an area without a COVID19 ‘outbreak’?!!
It might as well say, ‘keep being scared’ we’re not really sure what’s going on with you. Not helpful.
But as always, thank you for bringing it to us and I look forward to your interpretation of this carefully worded non-statement from MSIF.
Unless loads of people on Ocrevus died, I’m personally not going to worry about it. In the data Prof G posted the other day for Rituximab it was, what 1/500 chance of being hospitalised (and that’s not a 1/500 of dying even)? Well we were unlucky enough to be the 1/500 to get MS, so I’d take my chances on being that unlucky again!
There’s so much hysteria online in the MS community from differing advice, I don’t think it’s helpful for anyone mentally..
Personally i’m going to continue to be sensible following the rules for the general public, but avoid public transport/busy places. Carex are also getting a nice percentage of my salary 🙂
Based on the data that should be online today or the next few days I have collated information on social media I have there have been 5 deaths out of 395 people and these people typically had the covid risk co-morbidities. Youth is a wonderful protecter against COVID as you have fully functional macrophages….I wonder what met formin does there must be data as diabetes are having a tough time
What I should have said too is the hysteria on social media is all around the DMT, when like you said, it sounds like the other risk factors are more of a bummer. Well if you need a younger Covid Ocrevus guinea pig give me a shout. I’ve got an oximeter ready (mum insisted on sending me one)!!
We got one from off eBay it was sh*te
Hi MD is that specific to ocrelizumab?
Rituximab too, but ocrelizumab is much more potent
This. So much this.
I just hope my neuro agrees. In my not so humble opinion it should be my decision but we know how it is…
Seems to be what you were saying last week doesn’t it? Must be going off Sweden and Iran data because nothing further was mentioned from anywhere else on IWIMS this week was it?
The comment about lymphocyte count for alemtuzumab and cladribine – does this apply in general to other pwMS on different DMTs? For instance if your lymphocyte count is high on anti CD20 does that change anything?
Not sure how to interpret their guidance with relation to shielding or not (strict social distancing is different or not)
I think the message is clear, pwMS should carry on with their lives observing the caution that the general population must have.
Particular cases of lymphopenia should be monitored individually.
Everybody must be aware for Sars-covid 2 and all other virus !! Take care!
Is it too soon to have data on long term effects after having the virus? I’m not in the shielding group but haven’t returned to work in a primary school because kids can’t socially distance, neither can the staff
Very helpful information thank you.
“There is some preliminary evidence that interferons may reduce the need for hospitalisation due to COVID-19.” interferons are antiviral, they should have been studied even more with respect to COVID-19. From my limited knowledge, they also have to be given early in the disease, but COVID patients are treated very late…
Yep you can see that I can see that why not the doctors
Since late Feb 2020 there have been over 160 Covid 19 posts! Please, please start winding it down. The virus is on the wane – we have a treatment that can reduce mortality, good old Vit D may help, and some potential vaccines in the pipeline. Some MS researcher somewhere must have a paper they have written up which is relevant to MS! There must be some MS news that is not Covid related? 2020 will go down as the worst year in MS research and the repercussions will feed through into 2021. I used to moan about Prof G and his cronies heading off to exotic places to attend endless MS conferences. I take it all back. I’ll pay for the next jolly. Anything to get some real MS research / trial news and move on from Covid bloody 19!
All this concentration upon COVID-19… Okay, it is the virus of the moment, it had/has the necessary attributes to become a pandemic. But we had MERS and SARS just recently, to hope that this current pandemic will be the last for another 100 years seems short-sighted to me. And thankfully coronaviruses are quite easily destroyed, are not very robust. Compared to norovirus for example. And how would an outbreak of a disease like measles, which has an R-value of 20 in a susceptible population be? Thinking surely needs to be broadened out, e.g. therapies for MS which a) work and b) don’t compromise immune systems.
Thank you for the clarification, I need to restart my DMT medication and your reviews are very important in my decision with my MS physician in Florida,USA. You know him, it’s Dr. ***** Neurologist.