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Suebee 03-10-2020 10:23 PM

Hi all, there seems to be a lack of detailed info here in the States about what immune supressed individuals should do to stay safe other than "avoiding" crowds. BUT luckily, the UK Trust website has very specific and relevant recommendations dated 3/6/20( and kept current) , so I repost it here for Americans with MS on DMTs, who are in need of this advice:
"The [UK] 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 our initial advice below based on what we currently know, 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 one 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. They 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. These are general guidelines to help 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 recommend that people with MS who are taking natalizumab (Tysabri) continue as normal, but 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.

“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."

Mayzent, Arzerra, rituximab, and HSCT
“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.”"

Thank you UK MS Society for your leadership and getting this important info to the public during this corona virus spread.

Everyone, stay safe out there.

Suebee 03-10-2020 10:28 PM


Drillerdou 03-11-2020 09:34 AM

Thanks for posting this, I have wondered. We also still need to keep in mind that influenza is still statistically more dangerous.

Suebee 03-11-2020 11:46 AM

At Risk individuals need More guidence
The Today Show highlighted a Mom with MS, who understands why CDC gives reassurance but questions their response for At Risk people. She reminds us about deaths to At Risk individuals from H1N1, which happened to her sister.

Drillerdou 03-11-2020 12:39 PM

I feel very sorry for what she went through. About 15 years ago my best friend and best man passed at the age of 27 from a rare infection that even more rarely makes a person ill and even more rarely would kill them. Makes me think about the fragile human condition. I think currently the most important thing we can do is discuss these matters. I believe we in particular need to be careful, but not just because of covid 19, but any possible infections.
I'm worried about how much worse things will get before they get better, I've even wondered about the supply of our dmt. I have even thought about visiting public spaces. I'm more worried about panic in the general public

Suebee 03-11-2020 07:49 PM

Drillerdou, yes I agree, we are now forced to face the fragility of our human condition. You’re right too that we shouldn’t panic because then we can’t make rational decisions if panicked. But I’m so frustrated that wE currently lack federal guidance on how to best mitigate it and state and local governments are left on their own to make their judgements on this. In addition, assurances by gov’t feel misplaced. It appears most of the population will be exposed and mitigation efforts must be put in place to “flatten the curve” of transmission, otherwise it is inevitable that we will over burden our hospitals, and unable to treat the sickest.
Don’t panic, but take seriously. Stay safe.

Link explaining mitigation to spread of virus is to NOT change number infected but to slow transmission to allow healthcare system to keep up.

Suebee 03-12-2020 09:19 PM

Make dmt stop/start decision case by case
Bart's blog dr posted that decision to stop/ start dmt be cause of corona virus, it should be case specific and in best interest of patient:
"Clearly any decision to start a DMT during the COVID-19 epidemic will need to be taken carefully and will depend on the state of the COVID-19 epidemic, not only in the particular country concerned, but in the specific area, the patient lives and is being treated in. For example, aggressive public health steps to contain the spread of the virus locally may make it relatively safe for a patient to start an immunosuppressive therapy. My concern is that the COVID-19 epidemic may trigger a large number of neurologists and patients to reconsider their treatment strategy and choice of initial DMT and to opt for less effective immunomodulatory DMTs. A change in treatment strategy driven by COVID-19 needs to be carefully considered. The COVID-19 epidemic in all likelihood will be short-lived and it would be unfair to patients treated during the epidemic to be disadvantaged in the long term regarding the management of their MS. We have spent an extraordinary amount of time and effort to activate the MS community; to get across the principle that ‘time is brain’, to treat MS proactively to a target of no evident disease activity (NEDA) and more recently to flip the pyramid and use higher efficacy treatments first line. These treatment principles are evidence-based and should not be thrown out in the context of a potential but yet undefined risk to our patients that in my opinion is being overemphasised; please remember we have no data on COVID-19 infection in patients with MS on DMTs. "

Suebee 03-13-2020 05:45 PM

Video from U.K. Bart’s dr expert on MS
I found This video reassuring so I’m posting it. If you want to hear more up to date info from a top neurologist on MS/covid-19, I recommend. It is 10 min long, explains what we know about MS and virus susceptibility, and how dmts impact immune response to virus. If you’ve had enough hearing about corona, Just Skip it, we all need to keep physically and mentally healthy. Stay safe, suebee

Suebee 03-15-2020 04:24 PM

Ms self-care short video
Here is a short self-care video for people with MS during the pandemic my MS advocate Vicki Hadge. I found it nice to be reminded about daily things I can do for self care. It is honest and not preachy. Here is link.
Viki Posts links to yoga and meditation below video if you are interested.

We are in this together. Suebee

Suebee 03-16-2020 10:47 PM

UK Public Health Dept issues MS guidelines
March 16th, the UK Public Health Dept. Issued strong urging to MSers and other at risk groups to follow stringent social distancing rules, as follows:
"What is social distancing?
Social distancing measures are steps you can take to reduce the social interaction between people. This will help reduce the transmission of coronavirus (COVID-19).
They are:
Avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough;
Avoid non-essential use of public transport, varying your travel times to avoid rush hour, when possible;
3.Work from home, where possible. Your employer should support you to do this. Please refer to employer guidance for more information;
Avoid large gatherings, and gatherings in smaller public spaces such as pubs, cinemas, restaurants, theatres, bars, clubs
Avoid gatherings with friends and family. Keep in touch using remote technology such as phone, internet, and social media.
Use telephone or online services to contact your GP or other essential services.
Everyone should be trying to follow these measures as much as is pragmatic.
For those who are over 70, have an underlying health condition or are pregnant, we strongly advise you to follow the above measures as much as you can, and to significantly limit your face-to-face interaction with friends and family if possible.
This advice is likely to be in place for some weeks."

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