One thing that has been really clear is that over the last few weeks, people who have MS and are on DMTs are in need of some clear and consistent guidelines on what to do in relation to isolation, and continuation or not of their treatment regime. There have been some recommendations, however differences have led to confusion and additional anxiety for people with MS.
It has been suggested that people with MS should follow the guidelines as laid out by both WHO and the CDC for people who are at a higher risk due to having a severe health condition. There are recommendations that all patients on DMTS discuss their personal treatment plans with their health care team and identify the best course of action. Each individual drug and person may need a tailored response. People with MS are not typically being encouraged to stop their DMTs , and they are being asked to discuss risks of doing so with their neurologist or MS nurse.
Particular caution is to be paid to those which are cell depleting therapies, or those that may lead to a severity of disability if the drug is discontinued. I’ve tried to summarise some of the key questions in this blog to make it a little easier to understand.
Should I stop taking my MS medication during the pandemic? No, although some websites and health care practitioners have recommended that some treatments are delayed or postponed. In certain cases, stopping your DMT may put you at more risk than if you continued to take the treatment. I am not a medical expert but everyone is encouraged to have a discussion with their health care team to weigh up their individual circumstances.
Do all DMTs mean I will be at more risk of catching COVID-19? No. All of the DMTs work in a different way, and to put it simply there are about 3 groups (except stem cell therapy which I have left out of here in purpose).
Immunomodulators with no impact on immune function. These drugs do not lead to an increased chance of a person taking them getting an infection, and they work by altering a specific aspect of the normal immune response. The drugs that are in this category are tysabri, copaxone, the interferon drugs such as avonex and rebif. If you are someone taking one of these drugs you are still classed as vulnerable as you have MS. You will need to follow the precautions for vulnerable and elderly.
There are a subset of the immunomodulators that do have an impact on the immune response. With these, people with MS who take them are less able to fight off infections. People on these medicines may find they have more coughs and colds generally due to a weakened immune response. Drugs in this group include Tecfidera, Gilenya and Aubagio. This means that you may be at an increased risk of infection and may have less ability to respond to an infection of the virus. If you are taking one of these drugs, you may be classed as severely vulnerable and therefore need to take the additional precautions to shield you from the virus.
The final group of medications are the immunosuppressants which deplete cells of the immune system called lymphocytes. These are needs to fight infection. If you take one of these drugs you may be more at risk. Drugs in this group are Ocrevus and Lemtrada. You may have been asked by your health care provider to postpone treatment if you are on Ocrevus, and if you are starting Lemtrada, this may have been delayed and an alternative medicine found.
Do I need to fully quarantine myself if I am taking a DMT? As someone with a chronic condition, you should ideally be taking every precaution to not expose yourself to the virus. As someone with MS, independent of the type of DMT you are taking, you are already more vulnerable and may well have a number of other risk factors that may complicate your response to the virus should you catch it. If you are someone who lives alone and cannot get food and essentials brought to you, ensure to limit contact with others, and follow the guidelines for preventing the spread of the virus.
Do I need to switch medicines during this time to make me mess at risk? This is something you would need to discuss with your health care team. They may feel it is safer for you not to be on your current DMT (in Sheffield they have stopped Ocrevus and Lemtrada for example). However if you are on one of the other medications, general guidelines seem to be to stay on your medications to prevent the risk of flare ups and potentially lasting disability. Although I do not like the idea of having to go into the hospital for my infusion at the moment, i like to think that I am also protecting the NHS from further over burden by limiting the risk of me getting unwell from MS symptoms.
What should I do if I am about to start a new treatment? This is a tough question and needs to be a personal decision between you and your health care team. You would need to weigh all of your personal risk factors including your general health. A number of treatments for ms are not being started at this time in the uk and you may be offered an alternative