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General advice for people with MS, including information on medications

Last updated: 01/09/2021
Last reviewed: 22/09/2021

 

How to protect yourself from getting 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 practice social distancing 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/or 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

  • Use alternatives to face-to-face routine medical appointments when it is appropriate (for example, telephone appointments).


Information from around the world has indicated that 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,needing assistance to walk)

  • People with MS who  also have heart or lung

Caregivers and family members who live with, or regularly visit, a person with MS in one of these groups should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

In order to minimise the risk of being infected by COVID-19, the standard precautions advised by the Australian Government should be followed. This is the best source of advice on how to keep yourself safe and will be updated regularly. You can also stay informed by downloading the official government “Coronavirus Australia” app in the Apple App Store or Google Play, or joining their WhatsApp channel on iOS or Android.

 

What to do if you develop symptoms of COVID-19 infection

If you are concerned that you are developing symptoms of COVID-19 you should commence the usual precautionary measures including frequent, thorough hand washing, self-isolation and wearing a mask. To seek further information, please contact: 

  • Coronavirus Health Information Line 1800 020 080

  • Health Direct Hotline 1800 022 222

  • Your General Practitioner (note: do not proceed to the medical practice without first advising the receptionist that you have COVID-19 symptoms before you leave home)

  • A coronavirus testing centre (these are listed for each state by the relevant health department, again please phone ahead to check if an appointment is needed or if the testing centre is walk-in and always wear a mask)
  • COVID-19 symptoms can change and deteriorate rapidly. Call 000 immediately and request emergency help if you are experiencing breathing difficulties. 
 

What to do if you receive a confirmed diagnosis of COVID-19 infection

If you receive a confirmed diagnosis of COVID-19 infection you should:

  • Follow the standard self-isolation advice

  • Follow the advice of the diagnosing doctor or health care facility

  • Seek the advice of your neurologist/MS specialist health care team as soon as possible regarding any changes needed to your MS treatment and other medicines. Advising your MS specialist health care team also helps them to gather as much information as possible about COVID-19 and MS. 

 

COVID-19 Restriction Checker Tool

Healthdirect Australia has developed a COVID-19 restriction tool to help Australians to easily obtain the information they need to understand current restrictions in their own area and what is limited and allowed. Information is updated multiple times a day from official sources across all states and territories, making it the only national central source of information about restrictions. 

You can find the checker tool here: COVID-19 Restriction Checker Tool.

 

Managing relapses during COVID-19

People with MS should seek medical advice as they normally would 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 by telehealth if the option is available). However, with many clinics and hospitals following COVID-19 safety recommendations, it is still safe to attend an examination if recommended by your MS specialist health care team. With certain types of relapses, a physical neurological examination may be preferred to plan your best care options. In many cases, it is possible to manage relapses at home with the appropriate assistance from your neurologist and MS specialist health care team. 

It is important to let your MS specialist health care team know of any symptoms of a relapse as soon as possible to consider whether steroid treatment may be required. 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. Your neurologist and MS specialist health care team can provide further, individualised advice on this.

People with MS should continue to participate in rehabilitation activities as prescribed post relapse and try to stay as active as possible during the pandemic. This may be possible through remote sessions or in clinics following the appropriate and mandated safety precautions to limit the spread of COVID-19.

 

Managing MS Medications during COVID-19

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, especially in regard to disease modifying therapies (DMT’s) because of the very real risk of relapse when DMT’s are ceased.

This is in view of the low risk of contracting COVID-19 in Australia, the lack of evidence for any increased risk of COVID-19 infection or its complications in people with MS on immunomodulatory therapies, and only a marginal increase in the risk of a more severe course of COVID-19 in a specific group of DMT’s, which includes rituximab and ocrelizumab. 

Specific information related to each of the MS DMT’s and treatments during the pandemic can be found below.

It is important that if you have any questions about the timing of your MS DMT’s and vaccinations that you discuss this with your neurologist or MS specialist health care team. Certain DMT’s may need slight adjusting during this period, but most will continue as usual. The Australian and New Zealand Association of Neurologists (ANZAN)/MS Research Australia vaccination guidance discusses managing vaccinations and DMT’s in more detail detail and can be found here.

 

With regards to specific MS therapies, these are the recommendations from the Australian and News Zealand Association of Neurologists:

Self-injected 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

Intermittent immunotherapies 

(plasma exchange, intravenous gammaglobulin [IVIg]):

    • These therapies have a minimal impact on immune function.
    • You should continue these medications and follow the standard advice regarding prevention of COVID-19 infection.

    Regular potentially immunosuppressive MS therapies 

    (natalizumab [Tysabri], fingolimod [Gilenya], siponimod [Mayzent], dimethyl fumarate [Tecfidera], teriflunomide [Aubagio]):

    • These therapies are mildly immunosuppressive, there is currently no evidence that they increase the risk of COVID-19 infection. Specifically, studies of natalizumab, dimethyl fumarate and teriflunomide have not shown any cause for concern.
    • Because of the very real risk of relapse on discontinuing these therapies compared to the currently low risk of COVID-19 infection, the present advice is that these medications should be continued.

    • Your neurologist may wish to monitor your immune cell counts more frequently.

    • You should follow the standard advice regarding prevention of COVID-19 infection.

    Immunosuppressive therapies 

    (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, the present advice is that these medications should be continued.
    • Your neurologist may wish to monitor your immune cell counts more frequently.
    • You should follow the standard advice regarding prevention of COVID-19 infection.

    Pulsed immunosuppressive therapies 

    (rituximab [Rituxan], ocrelizumab [Ocrevus], alemtuzumab [Lemtrada], cladribine [Mavenclad], autologous haematopoietic stem cell therapy [AHSCT])

    • These therapies are immunosuppressive to varying degrees and for variable periods of time.
    • Because of the pulsed nature of these therapies there are options to delay courses of treatment.
    • Decisions on whether or not to delay a course of these therapies should be discussed with your neurologist.
    • Because of the very low risk of COVID-19 in many states and territories the use of alemtuzumab has resumed sometimes with additional precautions of self-isolation immediately before and after therapy.
    • A study of cladribine has not shown any cause for concern.
    • The risk/benefit profile of rituximab and ocrelizumab in those with additional risk factors for worse outcomes from COVID-19 (age >60 years, male gender, comorbidities, higher levels of disability) needs to be considered carefully on a case-by-case basis.
    • 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.

     

    Influenza vaccine

    The COVID-19 vaccine two-dose schedule should take priority over influenza (flu) vaccine. In regard to the Pfizer vaccine, patients are recommended to receive two doses of the COVID-19 vaccine given 21 days apart and then wait a short period before receiving a flu vaccine. Please book to have your influenza vaccine at least one week after completing your second COVID-19 vaccination so that the opportunity to be protected against influenza is not lost. For those people receiving the Astra Zeneca vaccine, the time period between the 2 doses is longer and you should discuss the timing of the flu vaccine with your GP. It may be preferable for you to have the flu vaccination a week after your first COVID-19 vaccine, so that you are protected over the winter months.

     

    Advice for looking after your mental health during the coronavirus outbreak

    The Federal Government’s Head to Health website can help you find the right digital health resources for your needs. This includes resources on how to support children and others.

    Beyond Blue also have a page dedicated to looking after your mental health during this time. Click here to access information, advice and strategies to help you manage your wellbeing and mental health during this time.

     

    Advice regarding the NDIS

    Click here to access information and resources regarding the NDIS and COVID-19 support.

     

    Disability Information Helpline:

    This helpline provides information and referrals for people with disability who need support because of COVID-19. The Helpline can assist families, carers, support workers and services as well.

    Disability Information Helpline: 1800 643 787.

    The Helpline is available Monday to Friday 8am to 8pm (AEST) and Saturday and Sunday 9am to 7pm (AEST) and is closed on national public holidays.

     

    Management and Operational Plan for People with Disability:

    The Plan is designed to support the objectives of the Australian Health Sector Emergency Response Plan.

    It aims to minimise COVID-19 and its effects among people with disability; inform people with disability, their families and support workers; support effective care and rehabilitation for people with disability who contract COVID-19; and to support people with disability to continue to have access to non-COVID health care during the pandemic.

    More information is available here.

     

    Helpful Hotlines:

     

    Departments of Health pages for each state/territory:

     

    State and territory MS organisations: