General advice for people with MS

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’re 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’s appropriate (for example, telephone appointments).

• 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 conditions

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.

If concerned that you’re developing symptoms of COVID-19 you should start 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’re experiencing breathing difficulties.

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

Healthdirect Australia has developed a COVID-19 restriction tool, to help Australians 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.

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’s 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’s possible to manage relapses at home with the appropriate assistance from your neurologist and MS specialist health care team. 

It’s important to let your MS specialist healthcare 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 healthcare 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.

If you’re on a regular medication for MS or a related condition, then it’s 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 ceasing DMTs. 

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’s 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 healthcare 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 Australia vaccination guidance discusses managing vaccinations and DMT’s in more detail detail and can be found here.

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]):

(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 hasn’t 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.

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.

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 has 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.

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

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

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.

There is also a website www.dss.gov.au/disabilityhelp which provides further information

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 healthcare during the pandemic.

More information is available here.