Information on coronavirus (COVID-19) and neuroinflammatory disease

Microscopic image of a virus

Information for people who attend NHS Lothian neuroinflammatory clinics at the Anne Rowling Clinic.  Published Friday 20 March 2020.

We are aware that many people with neuroinflammatory conditions, and their families, are concerned in light of the current COVID-19 situation. People living with neuroinflammatory disorders may be at higher risk of severe COVID-19 infection due to their underlying condition and sometimes because of their medications. The UK Government is issuing regularly updated advice on social distancing and self-isolation measures for “at-risk” groups.

The COVID-19 situation is developing rapidly and we strongly recommend you check the following sources of information regularly. These information sources are updated on a daily basis.

Detailed advice specfic to certain conditions can also be found on charity and support group websites, including:

At the same time, anyone with a neuroinflammatory condition is recommended to stay on their usual medications. This includes treatments which suppress your immune system such as steroids (prednisolone), azathioprine, mycophenolate and methotrexate. While these drugs might slightly increase your risk of severe COVID-19 infection, it is likely that the risks of stopping these medications are greater because this can cause your neurological disease to get worse.

Please do not stop taking these medications without talking to your medical team first. In particular, steroids should NOT be stopped suddenly. Please follow government updated advice about how to best protect yourself from infection.

If you develop COVID-19

If you develop symptoms suggestive of COVID-19 infection then please follow the advice on the NHS Inform website, in particular when to contact the NHS 111 service.

If you are regularly taking a medication that affects the immune system and you have a confirmed diagnosis of COVID-19/coronavirus infection, then you should contact your neurology team for advice on whether your treatment should be paused until you have recovered.

The Anne Rowling Clinic and telephone consultations

From Monday 23rd March, all appointments at the Anne Rowling Clinic will take place by telephone.

If you have an appointment at the Clinic from Monday 23rd March onwards, a member of the team will phone you at your allotted appointment time to carry out your consultation by telephone. Please do not come to the Clinic. 

We are also experiencing a high number of telephone and email enquiries with lower than usual staff. So please help us, and other patients, by only contacting us with questions related to your neurological condition that you attend the Anne Rowling Clinic about and not any other medical enquiries. Thank you. 

Telephone: 0131 465 9500 (NHS Lothian / Anne Rowling Clinic patients only)

MS Nurse Specialists Telephone: 0131 537 2117 (NHS Lothian / Anne Rowling Clinic patients only)

Infusions at the Programmed Investigation Unit (PIU), Western General Hospital, Edinburgh

If you are having an infused (intravenous) therapy at the PIU, at the current time you should continue to attend as normal , but please phone ahead to check. Intravenous immunoglobulin therapy (IVIG) is unlikely to increase your risk of severe COVID-19 infection.

If you feel unwell or are self-isolating because you have symptoms please do not come to the PIU. Instead, telephone the PIU nurses so your infusion can be rearranged.

For the PIU nurses telephone: 0131 537 2114

This article was published on: Thursday, March 19, 2020