Data from the MS Register is helping us find out more about COVID-19 vaccines and their impact on people with MS.
We’ve learnt a lot about COVID-19 over the last year. MS experts have been working hard to understand how the virus affects people with the condition. For example, we know having MS doesn't make you more likely to get COVID-19 compared to the rest of the population.
And we’re continuing to support the UK MS Register to collect data that’s helping shape advice for people with MS during the pandemic.
But there’s still lots we don’t know, so research is ongoing. In particular, researchers are now working hard to understand how the new COVID-19 vaccines work in people with MS and the extent to which some disease-modifying therapies (DMTs) affect how well the vaccines work.
COVID-19 vaccine side effects for people with MS
To build our knowledge, the MS Register team have been asking people with MS who've had the vaccine how they felt afterwards. Of 2348 people who responded, less than half said they experienced a reaction and, if they did, were likely to describe it as mild or moderate. Only 1% described their reaction as severe. The most common side effects reported were fatigue, headache and pain.
This information is based on people self-reporting how they felt after the vaccine, which will vary from person to person. In this survey, severe doesn't necessarily mean a severe allergic reaction. Some people might consider a headache to be a severe reaction but others might consider that to be a mild reaction.
These results haven’t been published in a peer-reviewed scientific journal yet which is the gold-standard for identifying reliable research. But we’re sharing the data as it emerges to help people make informed decisions regarding vaccination.
What does this mean for people with MS?
The findings haven’t yet been peer-reviewed but they’re in line with the advice on COVID-19 vaccines from our medical advisors, the Association of British Neurologists and the MS International Federation (a global network of MS organisations). They all say the COVID-19 vaccines are safe for people with MS.
People with MS have been asking if their DMT will have an impact on how well the vaccines will work. Based on research into other vaccines, it’s possible that people taking some DMTs will not mount a complete immune system response to COVID-19 vaccines, making the vaccine less effective. Research into this is ongoing.
However, our medical advisers discourage people from substantially altering their MS treatment in hope of increasing the effect of the COVID-19 vaccines. This is because the potential harm would outweigh the potential benefit and even a reduced response is likely to be better than none. They advise that you should get vaccinated even if on DMTs. And no-one should stop their DMT unless advised to by their MS team.
Everything we know so far tells us vaccines are a safe and important way for everyone with MS to gain protection against COVID-19. We’re keeping a very close eye on research and will update you when we know more.
How you can help
The MS Register is still gathering data on how COVID-19 is affecting people with MS. Sharing your experience helps us provide the right information.