#COVIDMS COVID-19. The UK Great and The Good Have Spoken. Hope the information is useful

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Advice from MS TRUST & MS Society

At the moment there is limited and general advice and this may well change over the next few months. You can find the latest advice and information on the NHS website and Gov.UK.

What is COVID-19?

COVID-19 is a new strain of coronavirus first identified in China. As a group, coronaviruses are common across the world. In general, they cause mild respiratory or sometimes gastric symptoms.

The symptoms of COVID-19 are:

  • a cough
  • a high temperature
  • shortness of breath

These symptoms are very similar to other illness which are much more common, such as a cold or flu. If you do develop these symptoms, it’s very unlikely to be COVID-19 unless you have been in close contact with someone with confirmed COVID-19 or if you have visited one of the high risk countries in the last 14 days.

What’s the risk of catching COVID-19?

The UK government has said the risk to individuals remains low and is taking measures to prevent the spread of the virus.

If you have MS, you have the same risk of getting an infection as anyone else. People with MS are not at a greater risk, your immune system is not weakened by MS.

The exception to this is if you are taking one of the more effective disease modifying drugs, such as GilenyaMavencladTysabriOcrevus or Lemtrada. One side effect of these drugs is a greater risk of infection; they work by suppressing parts of the immune system. If you are concerned, do check with your MS nurse or neurologist. You should not stop treatment or miss appointments until you have spoken to a health professional.

What can I do to avoid catching COVID-19?

The NHS recommends these simple measures to avoid catching or spreading infections

  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin immediately
  • wash your hands with soap and water often – use hand sanitiser gel if soap and water are not available
  • try to avoid close contact with people who are unwell
  • do not touch your eyes, nose or mouth if your hands are not clean.

What’s the risk if I do catch COVID-19?

For most people, COVID-19 is a mild infection. Treatment aims to relieve symptoms while your body fights the infection. There is no specific medication for COVID-19.

If you have MS and get an infection, be it COVID-19, flu, cold, a bladder infection, stomach upset or any other bug or virus, the way your body deals with the infection (for example a fever) can cause a temporary worsening of MS symptoms. Once you’ve recovered from the infection, your MS symptoms will settle down.

If your MS is more severe, you may have a higher risk of developing complications from COVID-19 or other infections. If you find it difficult to clear your lungs, there’s an increased risk of a cold or flu developing into a more serious chest infection such as pneumonia.

Find out more

The NHS website has further advice on COVID-19, which covers the risk of catching it, simple ways to avoid catching or spreading it, and what to do if you are worried you might have caught it.

Government information and advice on COVID-19.

Foreign Office advice on travel to affected regions.  

Barts MS Research blog has further discussions on disease modifying drugs and COVID-19.

The MS Society’s medical advisors have today (6 March 2020) released the following statement concerning coronavirus COVID-19. This advice may change as new information becomes available.

MS Society statement

The MS Society’s medical advisors, a group that includes some of the leading neurologists in the UK, have agreed the following joint statement on the COVID-19 coronavirus and MS:

“We have been closely following developments around the COVID-19 coronavirus. This is a rapidly evolving situation with a lot of uncertainty. We have set out below our initial advice based on what we know currently, but we will keep this under continual review as events progress and our knowledge of the virus improves.”

Practical advice

“In line with general public health advice, people with MS should ensure that they wash their hands frequently and where possible avoid being within 1 metre of people who are coughing and sneezing.

Those with other health conditions in addition to MS (such as cardiovascular disease or diabetes) should be especially careful to observe these recommendations.

“If you believe you may have been exposed to COVID-19, in the first instance you should contact the NHS 111 coronavirus service. If you remain concerned you can speak to your GP or neurologist.”

DMTs and coronavirus

“As of today (6 March 2020) our assessment is that people with MS would not normally need to stop taking a disease-modifying treatment (DMT) as a result of the threat of the virus.

As with many features of MS care, risks can vary widely from person to person and will depend on a range of factors including the clinical features of your MS, your general health, and any other long-term health conditions you have.

We have set out below an assessment of specific risks regarding different DMTs, as general guidelines to helpful people make an initial assessment of their own risk and decide when to contact healthcare professionals for more detailed advice.”

Copaxone, Aubagio, Tecfidera, beta interferons, and Tysabri

Glatiramer acetate (brand name: Copaxone), teriflunomide (brand name: Aubagio),dimethyl fumarate (brand name: Tecfidera) and beta-interferons (various brand names) are generally likely to be safer than the other DMTs as they are not considered to be generalised immunosuppressive therapies. We likewise recommend that people with MS who are taking natalizumab (Tysabri) continue as normal, noting that we will be closely monitoring the developing situation.

Lemtrada, Mavenclad and Ocrevus

“If you are taking a course of alemtuzumab (brand name: Lemtrada), cladribine (brand name: Mavenclad), or ocrelizumab (brand name: Ocrevus) you and your neurologist should consider delaying this as these treatments can hamper your immune system. The case for waiting could be particularly strong if you are scheduled for a second or third course of treatment of one of these DMTs, where a delay of a few months is relatively unlikely to affect the clinical progression of your MS. Before cancelling a course of treatment it is important to first discuss this with a neurologist or other healthcare professional – it may be that having understood the risks you feel it is best to continue, or there may be an alternative DMT that would be more suitable for the time being.

Gilenya

“It is important to note that fingolimod (brand name: Gilenya) may increase your chances of having more severe viral and other infections, including COVID-19. However if you are already taking fingolimod, stopping can lead to rebound MS disease activity, which in many cases would outweigh the risks of the virus. If you are considering beginning a course of fingolimod in the near future, you and your neurologist could consider an alternative DMT for the time being.”

Siponimod, ofatumumab, rituximab and stem cell therapy

“Other important points to note regarding specific disease-modifying therapies:

  • Siponimod (brand name: Mayzent), ofatumumab (brand name: Arzerra) and rituximab (various brand names) are not currently available on the NHS, but are available by private prescription in the UK. These could also affect your risk regarding COVID-19 and should be discussed with your neurologist or healthcare professional.
  • Haematopoietic stem cell transplantation (HSCT) is an intense chemotherapy treatment for MS. It aims to stop the damage MS causes by wiping out and then regrowing your immune system, using your stem cells. This treatment greatly hampers your immune system for a period of time and you and your neurologist or healthcare professional should consider delaying this treatment.

If you are concerned please contact your neurologist or other healthcare professional for more detailed advice.”

About the author

MouseDoctor

32 comments

  • The advice re Fingolimod doesn’t fill me with optimism I have to say. Staying on fingolimod could mean I have more chances of having severe symptoms and if I stop taking it, I could have a disabling rebound relapse. Yay.

    • Same thoughts here, it just really sucks. I have read a few times that it is only midly immunosuppressive, but I am not ready to take my chances. The assessment certainly does not sound like it would only be a minor issue. At least I have decided against cladribine, or I would otherwise be at the low point of the depletion phase right now.

      I wonder though: How well does T-lymphozyte count reflect the competence of the immune system to deal with infections? If they are in normal range, does that mean I am just as competent in my immune response as someone with the same amount who is not taking Gilenya?

  • I decided this week, contrary to my MS specialist’s opinion, to forgo my 3rd Ocrevus infusion this Friday. My MS is not life threatening or otherwise too bad. I’ll wait to see how things progress with Corona out here in The US. Right now it looks “not too good”. I’m aware also that forgoing this treatment will not undo changes that have already occurred in my immune system due to my prior two (one half) doses of Ocrevus. My understanding is that it will take some time (months to several years) for my immune system to get back to normal, if that’s the course I eventually stay on. (I own stock in Ocrevus [Roche], too bad for them.)

    So thanks for this update. I’m not an idiot or too paranoid after all. Good for me!

    • You own stock in Roche…if their anti IL-6 receptor comes through on COVID you could be in for a bonus:-) See if not all bad:-)

  • Could you tell me why the pneumonia vaccination is not recommended for those at risk? It is only given with the flu jab to people over 65

    • Not sure how you make this conclusion S1P1 agents are immunosuppressive and increase your risk of infection.

      However it again asks the question what is the cause of the fatalities is it too much immune system.

      • ‘However it again asks the question what is the cause of the fatalities is it too much immune system.’
        Are you referring to a ‘cytokine storm’?

        • I currently think it is an inital inhibition to detect and stop the virus replicating and then you get the immune response when there is virus all over the lungs and then immune system activate and creates a cytokine storm kicks in then part of the problem. You are problably destroying the lining of the lungs and older people probably you dont repair the damage fast enough. This is just think out loud and I dont know for definite.

          • I thought the reason the Spanish flu tended to kill young people was due to the cytokine storm it created. It all seems very weird to me.

          • Yes I believe that was the case, it was the immune response to the virus that was deadly

    • Pneumococcal vaccines (Pneumovax® 23 – PPSV23) and Prevnar® 13-PCV13)

      This is from the NMSS website

      PCV13 protects against 13 types of pneumococcal bacteria; PPSV23 protects against 23 types of pneumococcal bacteri
      a.
      One dose of PPSV23 is recommended for all adults 65 years or older.

      Both pneumococcal vaccines are inactivated and safe for people with MS.

      According to the AAN recommendations on immunizations for people with MS, pneumococcal vaccine should be considered for individuals with compromised pulmonary function, including those who use a wheelchair on a full-time basis or are bed-bound

  • I had my second infusion of ocrevus on Tuesday – I asked my neuro who said they didn’t know best advice but likely ok to continue. Am very fit and well with no symptoms at all from my RRMS. Lymph count 1.6 before infusion (1st infusion last sept). Literally the day after, covid 19 kicked off and here we are with this official advice. Such bad timing for me! Am feeling pretty terrified now…

  • Thanks for sharing MD.
    Thanks to Bart’s info we’ve been ahead of the game with this.
    As you know I’ve already shared this, but am going to again to try and max the numbers of Blog readers who get the benefit of seeing it:
    Recommend this interview with Richard Hatchett, CEO of the Coalition for Epidemic Preparedness, on C4 news last night and available on YouTube. It’s 20mins long and he definitely presents COVID19 from the scary angle. However, he makes a brilliant point about 10mins in about the added risks represented by young people being so relatively safe from coronavirus. He adds what a meaningful role they can play in mitigating the spread. I’ve shared with the large number of young adults in my life. Thought some others may wish to do the same.

    https://www.google.com/url?sa=t&source=web&cd=4&ved=2ahUKEwit97y6xYjoAhXBuHEKHaYgACIQFjADegQIAhAB&url=https%3A%2F%2Fwww.youtube.com%2Fwatch%3Fv%3DdcJDpV-igjs&usg=AOvVaw3Dnm0MGLB6L6ESq-CnisAJ

  • Siponimod (brand name: Mayzent) acts very similar to fingolimod and therefore take not of that advice.

    ofatumumab (brand name: Arzerra) and rituximab (various brand names) act very similar to ocrelizumab
    and therefore take not of that advice.

    HSCT is most similar to alemtuzumab

  • On the BBC website it explains why men are more affected by COVID-19 compared to women and children. It could be due to high rates of smoking in men in China, compared to women and children. The smoke damages the lungs and smokers being less healthy generally.

  • If the mechanism of Covid19 is the immune system attacking the lungs, would being on immune suppressants actually be in our favour?

  • Back in December my neurologist told me I need to choose a new DMT, and he suggested either Ocrevus, Cladribine or Fingolimod, in January I went back to the neurologist, and told him I really did not want to take any of these drugs, and with the coronavirus epidemic approaching, the doctor did not exert too much pressure and we agreed to reassess the situation in April. However, I felt that I should do something so I volunteered for the dietary study that they are doing at the Charité Hospital in Berlin. I have been randomised into the fasting group…fasting is not something I would have chosen to do on my own; however, with all the support: meeting a dietitian and a doctor every other day, the first 7 day fast was surprisingly easy, and during this time I feel that my MS symptoms eased a little (of course this could be the placebo effect or the Hawthorn effect). I now have to put the 4 kg that I lost back on to get my BMI back up to 19 while intermittent fasting, eating a very healthy anti-inflammatory diet in a 10 hour eating, 14 hour fasting pattern…Psychologically I feel this was the right decision, as I am actually doing something positive, with no potentially deadly side effects.

  • Mines more of a question .
    I’m 5 years clear after having chemo for HCL ( blood cancer) .
    Do I fall into the high risk category for vivid-19 .
    Any help would be great .

    • I’m not a doctor, but I dont see why your immune system with have reset itself and after 5 years there should be no brakes on your immune creating new immune responses. I guess ask yourself if you are fungus mungus with new infections…However what government class as high risk I dont know

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