Nottingham Centre for Multiple Sclerosis and Neuroinflammation
Multiple sclerosis (MS) is a disease of the central nervous system (i.e., the brain and the spinal cord) in which inflammation causes damage to nerve cells (neurons) and the myelin sheath which surrounds them. Initially there is good repair of the damage caused by inflammation, allowing for good clinical recovery. However, over time, such repair and clinical recovery tend to become incomplete and lead to various degrees of disability.
The MS service is based at the QMC.
It is led by a multidisciplinary team including neurology and neurorehabilitation consultants, specialist nurses, neurophysiotherapists, and occupational therapists.
Over 2,800 patients are regularly seen in our clinics.
We also provide Disease Modifying Treatments (DMTs) including Interferon-beta in all its available formulations, Glatiramer acetate, Teriflunomide, Dimethylfumarate, Fingolimod, Natalizumab, Alemtuzumab, Cladribine, and Ocrelizumab. DMTs are aimed at reducing inflammation in the brain and spinal cord and the accumulation of neurological impairment over time.
Our Neuroimmunology clinics treat patients with other diseases of the nervous system caused by a dysfunction of the immune system. These include, for example, nervous system vasculitis, sarcoidosis, and Behcet's disease.
Magnetic Resonance Imaging
Referred to as “MRI”, is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. An MRI scanner is a large tube that contains powerful magnets. You lie inside the tube during the scan. In Neuroinflammation cases, the brain and sometimes the spine are scanned as part of the investigation and monitoring process.
Referred to as “LP”, where a thin needle is inserted between the bones in the lower spine, fluid's pressure is measured, and a sample of fluid (cerebrospinal fluid) is taken for testing.
Visual Evoked Potential
Referred to as “VEP”, assesses how well the optic nerve works. Light patterns are shown to the eyes while your brainwaves are monitored using small, sticky patches called electrodes placed on the head. It's a painless test and can show whether it takes your brain longer than normal to receive messages.
What is MS?
MS is a condition that causes inflammation and/or degeneration in the brain and spinal cord. The whole mark of MS is a damage of the coating that protects the nerves (called myelin). This causes a range of symptoms; both physical and cognitive.
What are the types of MS?
Relapsing onset MS
Relapsing-Remitting MS (RRMS): This is the most common form of MS. About 85% of people are initially diagnosed with RRMS; they present with relapses defined by the development of new symptoms persisting for more than 24 hours (not caused by infection, injury, or change in environment). About two thirds of people with RRMS go on to develop secondary progressive MS (SPMS). In the SPMS stage, symptoms worsen gradually over time, with or without having relapses and remissions.
Progressive onset MS
This is also referred to as Primary-Progressive MS (PPMS). It occurs in about 10% of people with MS; characterised by slow worsening of symptoms from onset, usually with no relapses or remissions.
What is disease modifying therapy (DMT)?
Group of treatments used for people with MS. They reduce the number of relapses as well as reducing the disease activity measured by MRI scans. Some of the drugs slow disease progression and rate of brain atrophy (important in progressive MS types).
I need information about driving and public transport
Check this link for further information: https://www.mstrust.org.uk/life-ms/home-and-travel/driving-and-public-transport
I need information about work, financial benefits, insurance, and health costs
Check this link for further information: https://www.mstrust.org.uk/life-ms/your-finances
DMT options available to me
Depending on your MS type and presentation, you may be eligible for DMT. The following DMTs are approved for use by the NHS in the UK. The availability of each drug may vary in England, Scotland, Wales and Northern Ireland.
- Alemtuzumab (Lemtrada)
- Cladribine (Mavenclad)
- Dimethyl fumarate (Tecfidera)
- Fingolimod (Gilenya)
- Glatiramer acetate (Brabio, Copaxone)
- Interferon: beta 1a (Avonex, Plegridy, Rebif); beta 1b (Betaferon, Extavia)
- Natalizumab (Tysabri)
- Ocrelizumab (Ocrevus)
- Teriflunomide (Aubagio)
Check this link for further information: https://www.mstrust.org.uk/a-z/pregnancy
We run many research trials at our Centre; if interested in knowing more please visit: https://www.nuh.nhs.uk/research---multiple-sclerosis or https://www.nottingham.ac.uk/research/groups/clinicalneurology/index.aspx
MS Society – https://www.mssociety.org.uk/
MS Trust – https://www.mstrust.org.uk/
ShiftMS (MS forum and social network) – https://shift.ms/
There is considerable uncertainty about the impact of COVID-19 coronavirus on the UK. As of 6th March 2020, the government has advised that the risk of widespread infection with COVID-19 in the UK has risen from low to moderate. The Chief Medical Officer has estimated that the likely duration of an epidemic in the UK, if it occurs, is 6 months.
COVID-19 infection is more likely to occur, and more likely to have serious consequences, in people with compromised immune systems. All MS disease-modifying therapies affect the immune system, to varying degrees. So, it is important that all people with MS take simple preventive measures seriously.
General health advice for people with Multiple Sclerosis
- People with MS (pwMS) should follow diligently the advice given to the public on travel, self-isolation and response to potential symptoms of a coronavirus infection. This advice is updated regularly and is available here: https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public
- In summary, anyone with symptoms to suggest coronavirus should contact 111. Prevention of coronavirus is difficult because people are often asymptomatic when infected, but hand hygiene is important. As the coronavirus is an enveloped virus it is mainly spread via droplets, is not aerosolized, and is most effectively dealt with by frequent handwashing with soap.
- There is no treatment for coronavirus infection and no drug that can be used by immunosuppressed people to prevent infection.
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.
COVID-19 MS DMT monitoring
We recognise that that there is increase pressure on healthcare services and increased risk to patients of travelling to clinical sites. Abbreviated blood monitoring for DMTs may be necessary and desirable. We advise patients to remain vigilant to any new symptoms and report any concerns promptly, especially those who received Lemtrada, Cladribine, or Stem Cells therapy in the last 3-6 months. We will follow the recommendations detailed in this table: