Alert Level 2 – Advice for people with Multiple Sclerosis

March 23, 2020 | Support

On Saturday 21 March, 2020, Prime Minister Jacinda Ardern, announced New Zealand has moved into Alert Level 2 with recorded cases of community transmission of COVID-19.

Level 2 recommends that people over 70, or those with underlying respiratory conditions or compromised immune systems should stay at home.

Multiple Sclerosis NZ has sought specialist advice regarding the recommendations for people with Multiple Sclerosis.

New Zealand and Australian Neurologists are constantly reviewing the situation in developing the recommended advice. They are also collecting information on cases of people with MS who contract COVID-19. However, the numbers presently are too small to provide any definitive information. Due to the fast-moving pace of the pandemic abroad there has not, as yet been any reports from overseas experiences about the impact of COVID-19 on people with MS.

Are all people with MS Immunocompromised?

What we do know is that Multiple Sclerosis alters people’s immune systems, but it does not necessarily make them immunocompromised. We still do not know if MS makes people more at risk than the general population to COVID-19:

1. People treated with immunomodulatory drugs may be at increased risk of a more severe course with COVID 19. (There is no evidence that they are more at risk of catching it).
2. It is notable that people with MS on treatment do not appear to be at increased risk with respect to ‘seasonal’ flu viruses. However, COVID 19 is a new coronavirus that we don’t fully understand so we can’t assume this to be the same.
3. For all patients on and off treatment the single biggest risk for disease severity is age and comorbid illnesses, especially respiratory. At present the appropriate level of physical isolation should therefore be largely based on this.
4. At the present time it seems that the risk of MS relapses/rebound outweigh the risk of COVID-19 disease severity so patients should not stop treatment without discussion with their neurologist.
5. The Ministry of Health’s Alert Level 2 does recommend Employers allowing employees to work from home if they can and start other alternative ways of working. They have also been advised to support staff wellbeing, particularly those with existing medical conditions. If you feel the risks of continuing to work in the office are too great, we recommend discussing alternative working arrangements with your employer.

Disease Modifying Therapies

• Ocrelizumab

B-cell therapies (Ocrelizumab) act on different immune cells than other therapies. This type of immunity is less important in viral infections. However, in those who have had recent infusions (within the last three months), older individuals, or those with other health problems dosing should be delayed. It is important to discuss with your neurologist the recommended course of treatment. These individuals should also begin self-isolation.

• Autologous Haematopoietic Stem Cell Treatment (AHSCT)

Those who have had recent AHSCT are for a variable period of time (6-12 months depending on the individual) significantly immunocompromised and should self-isolate.

• Gilenya (Fingolimod)

Spingosine-1-phosphate receptors (Fingolimod) is moderately immunosuppressive and it is possible there may be an increase in risk. It may be prudent to have GP check lymphocyte count and if lower than 0.5 to discuss with your neurologist the best course of action in regards to self-isolation.

• Tecfidera (Dimethyl fumarate) and Aubagio (Teriflunamide)

Dimethyl fumarate (Tecfidera) and Teriflunomide (Aubagio) are only mildly immunosuppressive and likely only slightly increase in risk. With strict hygiene routines, practicing physical distancing in the workplace and avoiding crowds of people on Tecfidera and Augabio may wish to consider their options.

• Tysabri (Natalizumab)

Natalizumab is generally not immunosuppressive but it can decrease movement of lymphocytes. But there is no evidence yet as to what affect this may have on people who contract COVID-19.

Those on Tysabri should put in place strict hygiene routines, practicing physical distancing in the workplace and avoiding crowds of people at a minimum.

• Injectable Therapies

Injectable therapies are not considered immunosuppressive and there is no perception of increased risk.

We encourage all people with MS on treatment to review the risks and their current living and working circumstances in making their decision whether to begin self-isolation. Individuals in employment should look to have discussions with their employer about alternative working arrangements. It is important to bear in mind that the situation is changing daily and as more information is known the recommendations may also change.

Recommendations for ALL people with Multiple Sclerosis

While the impact or susceptibility of COVID-19 is still unknown MSNZ recommends that all people with MS, irrespective if on treatment or not, should stay home if they are:

• over 70
• have other health issues, particularly respiratory conditions
• or have immune deficiencies to stay home.

For those on treatment, while the risk is still unknown we recommend staying home where possible.

All people with MS are recommended to maintain strict hygiene routines including cleaning hands and surfaces regularly, practice physical distancing in public, at home and in the work place, avoid crowds and going to places where there may be groups and close proximity.

Staying at work

Whether or not you go to work will depend on your work environment. Those working in hot desk situations or where it is more difficult to maintain Ministry of Health recommendations for safe work practices, should consider whether to work/stay at home. We recommend Employers and Employees consider the recommendations of Employment New Zealand when reviewing work and pay arrangements. You should also review the information from WINZ regarding your current benefits or if you will be applicable for additional or new support.

Keeping your Neurologist informed

The main piece of advice from the Neurologists is do not stop treatment. At the present time it seems that the risk of MS relapses/rebound outweigh the risk of COVID-19 disease severity so patients should not stop treatment without discussion with their neurologist.

If you are concerned, sick or contract COVID-19 it is important to advise your Neurologist so they can be involved in your treatment plan.

The NZ and Australian Neurologists are developing a registry of people with Multiple Sclerosis who do contract COVID-19. If you do receive a positive test, ask your neurologist to add you to the registry or contact MSNZ and we will ensure this happens. It is through these records that Neurologists and researchers will be able to understand more comprehensively if there are any greater impacts of COVID-19 on people with Multiple Sclerosis or not.

Please note: The situation with COVID-19 is quickly changing and this advice may too.

See here for more information about COVID-19 and DMTs.