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[Updated] COVID-19 – Advice for Patients

April 9, 2020 | Advocacy, Life with MS, Research, Support, Treatments

NOTE: This post was updated on the 9/04/2020, to reflect the requirements of Alert Level 4 and emerging data.

Key updates:

  • Updated information based on very early emerging data
  • Updated information about your upcoming appointments
  • Latest travel advice
  • Information for overseas travellers in NZ with MS
  • Advice for healthcare workers with MS

 

This information and advice has been put together by the Australian and New Zealand Association of Neurologists for patients with Multiple Sclerosis.

Official Release: Alert Level 4 – Advice for people with MS – 9 April 2020

 

Background

Since December 2019 following cases emerging in and around Wuhan, China most regions of the world have now experienced cases of a novel respiratory illness caused by a new coronavirus which has been identified as SARS-CoV-2 (COVID-19).

The mortality of this infection amongst cases displaying symptoms and confirmed to have the virus is in the order of 1-7%, mainly in older persons with other health problems.

National and International measures to reduce the risk of transmission of the virus have been implemented in most jurisdictions. It is likely that these measures will slow the rate of transmission, but at this point it is unclear if further spread can be prevented and it is unclear how long the present outbreak will last.

At present there is no known effective treatment for COVID-19 and there is no vaccine. Older persons and those with pre-existing medical conditions (respiratory disease, heart disease, diabetes, cancer) have a higher risk of complications from COVID-19 infection. Men may also be at a slightly increased risk.

People with multiple sclerosis do not seem to be at increased risk, based and on data discussed in a world-wide phone conference on April 1, 2020 (E Waubant, M Sormani, International Federation of Women in MS). Approximately 200 people with multiple sclerosis have had symptomatic coronavirus infections, and few have died. They were largely older and with significant disability. Note this is very early data, collected during a crisis in many of the hospitals.

In New Zealand, we are currently at alert level 4. The number of people infected and the present risk of being infected with COVID-19 remains low. The latest data indicate that the number of new cases is declining. This suggests that the present transmission prevention efforts may be working.

This is the result of two main factors. The first is that the population of New Zealand has largely followed the recommendations of social distancing and personal protection. The second is the outstanding work undertaken by our Public Health teams who have successful traced the source of a large number of cases and implemented testing, quarantine and self-isolation as necessary. This has been an amazing achievement and goes largely unnoticed. However, we need to remain vigilant as the situation may still change. We will continue to monitor this and change our advice accordingly.

 

How can I protect myself from getting COVID-19?

In order to minimise the risk of being infected by COVID-19, you should follow the standard precautions advised by the Ministry of Health New Zealand (see Ministry of Health advice). This is the best source of advice on how to keep yourself safe and will be updated daily.

 

What if I develop symptoms of COVID-19 infection or have a confirmed diagnosis of COVID-19 infection?

If you develop symptoms of COVID-19 infection (see Ministry of Health advice on symptoms) or have a confirmed diagnosis of COVID-19 infection you should:

  • Follow the standard self-isolation advice (see Ministry of Health advice on self-isolation).
  • Follow the advice of the diagnosing doctor or health care facility.
  • Seek the advice of your neurologist or ask the diagnosing health care team to discuss with them or the on-call neurologist.

 

Who should I contact if I have symptoms of COVID-19 infection?

If you are concerned that you are developing symptoms of COVID-19 you can:

  1. Phone the Coronavirus Health Information Line 0800 358 5453  (or for international SIMs +64 9 358 5453).
  2. Phone your General Practitioner for an appointment (please phone ahead to make an appointment).

 

Should I come to my outpatient clinic, infusion or MRI appointment?

If you have visited a high-risk area, have symptoms of COVID-19 infection, or have had close contact with someone who has been diagnosed with COVID-19 please do not attend your outpatient appointment, infusion or MRI. Please contact your specialist clinic, MRI department, infusion centre or MS Nurse who will make alternative arrangements.

Please note:

  • Most neurology clinics have now moved to telephone or telehealth consultations.
  • MRI departments in hospitals and private radiology practices have implemented measures to limit the risk of infection.
  • Laboratory services are currently limited.
  • Please contact community laboratory to find your closest open collection centre.

 

Should I travel overseas?

Current travel advice is available on the New Zealand Safe Travel website. However, all travel has now been banned.

 

Should I have the flu vaccination?

It is recommended that all persons with MS have the flu vaccination when it becomes available in April.

 

What if I am a healthcare worker?

At present we have no evidence of an increased risk of COVID-19 infection or its complications in people with MS or related conditions, or in those on treatment. However, as indicated below there are potential, theoretical risks with some medications and it would be sensible for healthcare workers on any of these therapies to avoid work environments that would bring them into direct contact with people either known to be or likely to be infected with COVID-19. If you require any documentation to this effect, please contact your neurologist who will be happy to assist.

 

What if I test positive for COVID-19?

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 working with the MS Data Alliance to develop 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 (using our contact form or phone 0800 67 54 63) 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.

 

What if I am travelling from overseas?

If you are travelling from overseas and require assistance or access to MS treatments please contact us using out contact form or phone 0800 67 45 63 (+64 3 366 2581) and we will see how we can be of assistance.

 

What should I do about my medication?

If you are on a regular medication for MS or a related condition then it is recommended that you should continue to take this medication because of the very real risk of relapse when medication is ceased.

With regards to specific therapies:

  • Glatiramer acetate [Copaxone], beta-interferon [Avonex, Betaferon, Plegridy, Rebif]:
    • These medications are not immunosuppressive.
    • You should continue these medications and follow the standard advice regarding prevention of COVID-19 infection.

 

  • Plasma exchange, intravenous gammaglobulin [IVIg]:
    • These therapies have a minimal impact on immune function.
    • You may require a blood test before your treatment
    • You should continue these therapies and follow the standard advice regarding prevention of COVID-19 infection.

 

  • Dimethyl fumarate [Tecfidera], Fingolimod [Gilenya], Natalizumab [Tysabri], siponimod [Mayzent], teriflunomide [Aubagio]:
    • These therapies are mildly immunosuppressive, there is currently no evidence that they increase the risk of COVID-19 infection.
    • Because of the very real risk of relapse on discontinuing these therapies compared to the currently low risk of COVID-19 infection our present advice is that these medications should be continued.
    • Please ensure you are up to date with your blood safety monitoring
    • If you lymphocytes counts are low, your doctor may suggest more frequent monitoring.
    • You should follow the standard advice regarding prevention of COVID-19 infection.

 

  • Prednisolone, methotrexate [MTX], azathioprine [Imuran], mycophenolate mofetil [Cellcept], cyclophosphamide [Cytoxan]:
    • The level of immunosuppression with these medications is variable and depends upon the dosage and combination of treatments.
    • Because of the very real risk of relapse on discontinuing these therapies compared to the currently low risk of COVID-19 infection our present advice is that these medications should be continued.
    • Please ensure you are up to date with your blood safety monitoring.
    • If you lymphocytes counts are low, your doctor may suggest more frequent monitoring.
    • You should follow the standard advice regarding prevention of COVID-19 infection.

 

  • Ocrelizumab [Ocrevus], Rituximab [Rituxan], Cladribine [Mavenclad], Alemtuzumab [Lemtrada]:
    • These therapies are immunosuppressive to varying degrees and for variable times
    • Decisions as to whether or not to delay a course of these therapies should be discussed with your neurologist.
    • Please ensure you are up to date with your blood safety monitoring.
    • You should follow the standard advice regarding prevention of COVID-19 infection in some situations, on the advice of your neurologist, it may be appropriate to take additional precautions.

 

  • Autologous Haemapoietic Stem Cell Transplant [AHSCT]:
    • There is a general consensus against autologous haematopoietic stem cell transplantation at this time due to the higher risk of infection
    • This therapy is immunosuppressive to varying degrees and for variable periods of time.
    • Please ensure you are up to date with your blood safety monitoring.
    • You should follow the standard advice regarding prevention of COVID-19 infection, in some situations, it may be appropriate to take additional precautions.

 

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

Signatories

  • Simon Broadley
  • Bill Carrol
  • Natasha Gerbis
  • Deborah Mason
  • Mike Boggild
  • Heid Beadnall
  • Anneke van der Walt
  • Jeannette Lechner-Scott
  • Jane Frith
  • Suzanne Hodgkinson
  • Stephen Reddel
  • Richard Macdonnell
  • Michael Barnett
  • Mark Marriott
  • Pamela McCombe
  • Trevor Kilpatrick
  • Bruce Taylor
  • Allan Kermode

 

Other Resources

COVID-19.govt.nz

Ministry of Health (MOH)

Barts Blog MS

MS International Federation (MSIF)

MS Society (UK)

World Health Organisation (WHO)

 

Image by Thor Deichmann via Pixabay