Global COVID-19 advice for people with MS: update
COVID-19 is a new illness that can affect your lungs, airways and organs. It is caused by a novel coronavirus that was first detected in people in China in December 2019 and has since spread to other parts of the world.
There is currently limited evidence on how COVID-19 affects people with multiple sclerosis (MS). The advice below was developed by MS neurologists* and research experts from MSIF’s member organisations**. It is based on expert opinion and preliminary data† that is still being analysed, so should be taken with caution.
This advice will be reviewed and updated as further evidence about COVID-19 becomes available.
People with MS and healthcare professionals are urged to take part in the COVID-19 and MS global data sharing initiative to help find answers faster. Find out more here.
Advice for people with MS
People with underlying lung and heart conditions and those aged over 60 years are more likely to experience complications and become severely ill with the COVID-19 virus. This group will include many people living with MS, especially those with additional health complications and mobility issues.
Current evidence suggests that simply having MS does not increase the risk of dying from COVID-19. However, the possible long term consequences of having MS may make people more susceptible to having a severe case of COVID-19. The risk of having to go to hospital for COVID-19 rises with age, progressive MS and higher levels of disability.
All people with MS are advised to follow guidelines for reducing the risk of infection with COVID-19. The World Health Organization recommendations include:
- Wash your hands frequently with soap and water or an alcohol-based hand rub
- Avoid touching your eyes, nose and mouth unless your hands are clean
- Try to to practice social disntancing by keeping at least 1 metre distance between yourself and others, particularly those who are coughing and sneezing
- Avoid going to crowded places
- When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue
- Practise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them
In addition, we recommend that people with MS should:
- Wear a face mask in public and ensure that you are using it correctly by following these instructions
- Avoid public gatherings and crowds
- Avoid using public transport where possible
- Where possible, use alternatives to face-to-face routine medical appointments (for example, telephone).
Certain groups of people with MS may be at an increased risk of becoming severely ill or dying with COVID-19. The following groups should take extra care to minimise their exposure to the virus:
- People with progressive MS
- People with MS over the age of 60
- People with higher levels of disability (for example, an EDSS score of 6 or above)
- People with diseases of the heart or lungs
Caregivers and family members who live with, or regularly visit, a person with MS should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.
National lockdown measures in place in many parts of the world might be relaxed in the coming weeks and months. Until our understanding of the coronavirus improves, people with MS in these higher risk groups and their caregivers should continue to follow the advice above to reduce their risk of contracting COVID-19.
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 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 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.
Advice regarding aHSCT
Autologous Haematopoietic Stem Cell Treatment (aHSCT) includes intensive chemotherapy treatment. This severely weakens the immune system for a period of time. People who have recently undergone treatment should extend the period they remain in isolation during COVID-19 outbreak. People who are due to undergo treatment should consider postponing the procedure in consultation with their healthcare professional.
Seeking medical advice for relpases and other health concerns
People with MS should still seek medical advice if they experience changes in their health that may suggest a relapse or another underlying issue such as an infection. This can be done using alternatives to in-person clinic visits (such as telephone or video consultations) if the option is available. In many cases, it is possible to manage relapses at home.
The use of steroids for treating relapses should be carefully considered and only used for serious relapses. Where possible, the decision should be made by a neurologist experienced in the treatment of MS. People who receive steroid treatment for a relapse should be extra vigilant and may want to consider self-isolation for an appropriate amount of time to reduce their risk from COVID-19.
People with MS should continue to participate in rehabilitation activities and stay active as much as possible during the pandemic. This can be done through remote sessions where available or in clinics as long as facilities are taking safety precautions to limit the spread of COVID-19. People with concerns about their mental health should seek advice from their healthcare professional.
Advice for children or pregnant women with MS
At this time there is no specific advice for women with MS who are pregnant. There is general information on COVID-19 and pregnancy on the US Centre for Disease Control and Prevention website.
There is no specific advice for children with MS; they should follow the advice above for people with MS.
The following individuals were consulted in the development of this advice:
- Professor Brenda Banwell, Chair of MSIF International Medical and Scientific Advisory Board - University of Pennsylvania, USA
- Professor Simon Broadley - Griffith University and Gold Coast Hospital, Queensland, Australia
- Professor Olga Ciccarelli - Institute of Neurology, UCL, UK
- Dr Huang Dehui - Chinese PLA General Hospital, China
- Dr Fernando Hamuy Diaz de Bedoya, President of LACTRIMS - Universidad Nacional de Asuncion, Paraguay
- Professor Andrew Chan - Bern University Hospital, Switzerland
- Professor Jeffrey Cohen, President of ACTRIMS - Cleveland Clinic Mellen Center for Multiple Sclerosis, USA
- Dr Jorge Correale, Deputy Chair of MSIF International Medical and Scientific Advisory Board - FLENI, Argentina
- Professor Giancarlo Comi - Università Vita Salute San Raffaele, Italy
- Professor Kazuo Fujihara, President of PACTRIMS - Fukushima Medical University School of Medicine, Japan
- Professor Gavin Giovannoni - Barts and The London School of Medicine and Dentistry, Queen Mary University of London, UK
- Professor Bernhard Hemmer, President of ECTRIMS - Technische Universität München, Germany
- Professor Joep Killestein - Amsterdam UMC, Netherlands
- Professor Daphne Kos, President of RIMS - KU Leuven, National MS Center Melsbroek, Belgium
- Dr Céline Louapre - Sorbonne Université, France
- Professor Catherine Lubetzki – ICM, France
- Professor Aaron Miller - Chairman, National Medical Advisory Committee, National MS Society (US) - Icahn School of Medicine at Mount Sinai, USA
- Dr Mohammad Ali Sahraian - MS Research Center, Neuroscience Institute, Tehran University of Medical Sciences, Iran
- Professor Marco Salvetti -Sapienza University, Italy
- Dr Joost Smolders - ErasmusMC, Netherlands
- Professor Per Soelberg Sørensen - University of Copenhagen, Denmark
- Professor Maria-Pia Sormani, on behalf of the Italian MuSC-19 study - University of Genoa, Italy
- Professor Bassem Yamout, President of MENACTRIMS - American University of Beirut Medical Center, Lebanon
- Professor Frauke Zipp - Johannes Gutenberg University Medical Center in Mainz, Germany
**MSIF member organisations
- Dr Clare Walton, Nick Rijke, Victoria Gilbert, Peer Baneke – MS International Federation
- Phillip Anderson – UK MS Society
- Pedro Carrascal - Multiple Sclerosis Spain
- Dr Tim Coetzee, Dr Doug Landsman, Julie Fiol, Kathleen Costello – National MS Society (US)
- Dr Kirstin Heutinck – Stichting MS Research (Dutch MS Research Foundation)
- Dr Pam Kanellis – MS Society of Canada
- Nora Kriauzaitė – European MS Platform
- Dr Marc Lutz – Swiss MS Society
- Marie Lynning - Scleroseforeningen (Danish MS Society)
- Dr Julia Morahan - MS Research Australia
- Dr Emmanuelle Plassart-Schiess – ARSEP Fondation (France)
- Dr Paola Zaratin – Italian MS Society
†The following data sources were reviewed during the development of this advice:
- Data of the Italian MuSC-19 project - Sormani MP et al. Disease modifying therapies and Covid-19 severity in Multiple Sclerosis. (submitted)
- Exploratory data of the COVID-19 and MS Global data sharing initiative, as of 10 June 2020.
This statement was first agreed on 13 March 2020. The latest revisions were agreed on 17 June 2020