What will happen to my appointment?
All routine face-to-face appointments are cancelled for the foreseeable future. We will aim to contact you by phone when your appointment is due. If there is an urgent need for a face-to-face review, your consultant will be in touch.
Should I continue to do the monitoring blood tests?
You are required to continue to have the monitoring blood tests at the agreed interval as this is important for the safe administration of MS medications. We cannot continue your medication safely without monitoring. You must not attend a blood test appointment if you are feeling unwell or someone in your household has been unwell in the past 14 days.
Should I attend my infusion appointment?
- If you are on natalizumab (Tysabri), it is important that you attend your infusion as normal. We aim to change the frequency of the infusions to 6-weekly to reduce your attendance frequency (this shouldn’t affect the efficacy of the drug). The 6-weekly administration has already been implemented for many patients with MS worldwide.
- If you due the second/any subsequent course of ocrelizumab (Ocrevus), alemtuzumab (Lemtrada), or cladribine (Mavenclad) we are currently considering and frequently postponing the treatment based on blood results and disease activity to balance the risk of COVID-19 infection and control of MS. We will contact you with the next treatment date.
You must not attend any hospital treatment/ infusion appointment if you are feeling unwell or someone in your household has been unwell in the past 14 days.
Should I continue my medication?
You should continue your medication as normal. If you are unwell, see question 8 for further details.
If you are on interferon beta 1a, interferon beta 1b, copaxone, teriflunomide, dimethyl fumarate and natalizumab, please continue to take these drugs. They do not appear to significantly increase the risk of systemic viral infections.
If you are on fingolimod, please be aware that the risk of viral infections is thought to be moderately increased. So, you may be more prone to coronavirus infection and its complications. For most people on fingolimod, this risk is outweighed by the effectiveness of fingolimod in controlling their MS. So, in line with national guidelines we recommend most people continue fingolimod. It is important not to stop fingolimod without speaking to your MS team, because there is a risk that multiple sclerosis will become active and cause relapses in the weeks after stopping the drug. Please phone your MS nurse if you have stopped your medication so that we can advise you about restarting. If you are off fingolimod for more than 2 weeks you will need monitoring when you restart your treatment.
If you are on ocrelizumab, please be aware that the risk of viral infections is thought to be moderately increased. So, you may be more prone to coronavirus infection. For many people on ocrelizumab, this risk is outweighed by the effectiveness of ocrelizumab in controlling their MS. The MS team may consider delaying a further round of ocrelizumab until the risk of coronavirus infection is clarified or has passed, because it is clear from experience with a similar drug, rituximab, that an infusion of ocrelizumab will remain effective at controlling MS for longer than 6 months.
If you have had one round of cladribine or alemtuzumab, and are due another round, then you should discuss this further with your MS team. The risk of viral infections is highest in the three to six months after alemtuzumab and cladribine. Therefore, it is sensible to delay the second round of treatment until the risk of coronavirus infection has passed. It is safe to increase the gap between the first and second alemtuzumab treatments to 18 months, without a risk of a return of MS activity. The data are less clear for cladribine, but it seems similarly that the treatment can be delayed if necessary. If delaying treatment is a concern, together we could consider switching to another treatment.
If you have had two rounds of treatment with cladribine or alemtuzumab and are well, please be aware that the risk of viral infections is slightly increased. There is no need for you to have any further treatment, unless you have symptoms, or signs on an MRI scan, that your multiple sclerosis is becoming active again.
If you have had two rounds of treatment with cladribine or alemtuzumab and your MS has become active, then we will consider having a further round of treatment with cladribine or alemtuzumab. You should discuss this further with your MS team. The risk of viral infections is highest in the three to six months after alemtuzumab and cladribine. For most people, it would be preferable to consider switching to another treatment.
Do I need to stop my medication if one of my family members is unwell?
If you are in self-isolation because someone in your household is unwell, you should continue your medication as normal unless you become unwell.
Can I have Haematopoietic stem cell transplantation (HSCT)?
If you have been deemed eligible for HSCT, you need to know that this is an intense chemotherapy treatment for MS and carries a very high risk of infections for many weeks. We would recommend postponing this treatment until the risk of coronavirus has receded.
Can I still go to work? Should I self-isolate?
We follow the government advice, for example working from home, if possible. Currently we think that patients that are frail (with difficulties walking outside alone), have significant swallowing difficulties, have received alemtuzumab or cladribine within the last 3 months, or had haematopoietic stem cell transplantation for their MS, are at high risk for COVID-19 infection and should self-isolate for the next 12 weeks. In that case you are eligible for social support.
What should I do if I develop COVID-19 like symptoms or if I get in contact with someone who has it?
Visit this link for advice and guidance: https://www.nhs.uk/conditions/coronavirus-covid-19. If you are due to attend an infusion appointment, please DO NOT attend and inform us. If you feel unwell, you should stop your medication until you feel better. If you are on fingolimod, please phone your MS nurse when you stop your medication so that we can advise you about restarting. If you are off fingolimod for more than 2 weeks you will need monitoring when you restart your treatment.
Can I do anything to help the research on COVID-19 and MS.
Many of the above recommendations are based on the experience we have on treatments of MS with other viral infections. The only way to learn is by collecting data from patients with MS. We strongly encourage you to join the UK MS register and participate in the COVID-19 study. Collecting every 2 weeks data on viral and COVID-19 infections from many patients with MS will help us understand how we can best beat this virus. Please visit: https://www.ukmsregister.org/Coronavirus.