COVID-19 & MS DMDs

[Suebee]

Consider buying pulse oximeter!

Have you all noticed that some doctors have suggested that people consider buying a pulse oximeter as a personal home monitor in case you or your family contracts covid19? This is because covid19 can cause "silent hypoxia", insidious oxygen deprivation. A NY times article (cited below) states, "Pulse oximetry is no more complicated than using a thermometer. These small devices turn on with one button and are placed on a fingertip. In a few seconds, two numbers are displayed: oxygen saturation and pulse rate. Pulse oximeters are extremely reliable in detecting oxygenation problems and elevated heart rate." According to the NYTtimes, the reason the device is particularly helpful for managing Covid pneumonia is because unlike other types of pneumonia, covid pneumonia patients "don’t feel short of breath, even as their oxygen levels fall. And by the time they do, they have alarmingly low oxygen levels and moderate-to-severe pneumonia (as seen on chest X-rays). Normal oxygen saturation for most persons at sea level is 94 to 100 percent; Covid pneumonia patients [have been observed with] oxygen saturations as low as 50 percent." Similarly, a report by NPR (cited below) concurred, quoting another doctor's opinion that, "if you have symptoms consistent with the novel coronavirus, using a pulse oximeter*and*consulting with a doctor can be a good strategy." The NPR article did caution that a good oxygen saturation rate is only one piece of data, and to be aware of other symptoms of covid that may require medical attention such as severe dehydration or weakness.

I didnt want to sound alarmist so I was hesitant to post earlier that my family bought a pulse oximeter several weeks ago on line.( Be sure it is FDA approved and from a reputable vendor). Even though many are on backorder, keep on lookout for availability. Our Houston area Local hospitals had explained awhile back that treatment for covid19 would be managed at ones home, and an ER visit should occur only upon recommendation of a dr and to a correct facility prepared for your arrival. Since my daughter has asthma and I have weak chest/ core muscles from MS, we figured an objective oxygen saturation number would be helpful to us determine if we needed hospital care. Once the device arrived in the mail, our immediate benefit was feeling amazingly reassured that we could objectively recognize if we needed immediate medical attention. It also helped some panic attacks that were triggered by high pollen allergy induced respiratory issues. Such crazy times that a grass pollen allergy can make -one feel terminal.
Link to NYTimes article https://www.nytimes.com/2020/04/20/o...pneumonia.html
Link to NPR article https://www.npr.org/sections/goatsan...dea-to-buy-one

Stay well. Stay safe. Please pardon typos/ spelling errors. Not my strong point.

[Suebee]

Latest neuro view

In Mult Scler Relat Disord. 2020. doi: 10.1016/j.msard.2020.102073, The COVID-19 pandemic and the use of MS disease-modifying therapies, Gavin Giovannoni et al. Dr. G and multiple other neurologists published a commentary on MS treatment during pandemic. Their recommendations are meant as a guideline and seem consistent with his prior postings. My personal takeaway: 1) don't hold breath for vaccine - but do adequately treat your MS. The commentary explains, " Vaccines take time to be developed, tested and introduced at a population level. Delaying [MS DMT] treatment, de-escalating therapy by switching to immunomodulatory DMTs, such as interferon-beta, glatiramer acetate or teriflunomide, or interrupting dosing of DMTs to wait for a vaccine will delay the adequate treatment of MS, especially as it may take 12–18 months to develop a vaccine. We, therefore, need a pragmatic response on management of the potential threat of COVID-19 in individuals with MS.*"
My Second takesway: each MS patient has a different risk profile. The commentary states,"It is essential to consider the potential risk of morbidity and possible mortality for each MS patient, who [may get] COVID-19. The individual's risk profile is multifactorial; their DMT and consequent immune response is one of the factors. Other aspects to consider... include: smoking practices (increased cigarette smoking increases risk); ambulatory status (less mobility increases risk, especially if the patient is in a wheelchair); age (increasing age increases risk); weight (increasing weight impacts on ambulation and respiratory function); underlying respiratory illnesses, such as asthma or COPD."
Importantly, Dr. G also notes that other risk factors to weigh when managing DMTs are the frequency of a patient's visits to at a healthcare facility for labs, MRIs, or infusions, because of possible increase of exposure to virus.
Link to full article here: https://es.ereprints.elsevier.cc/9PB0020/fulltext

Stay well my friends.

[Suebee]

Cautiously Optimistic Data Ms DMTs/ Covid19

Hi All, I hope you are well and safe at home. This past week, I’ve been watching anxiously for more data on Covid19 outcomes from Europe and UK that use similar DMTs for MS as is used in the States. The progression of Covid19 appears to significantly worsen after day 10 or so of illness, and for that reason areas with earlier outbreaks have been giving out initial data on MS/ Covid19 outcomes. I’m glad to report that Dr. G at Barts in London calls this data hopeful and “information that will allow pwMS on immunosuppression to sleep a bit easier.”

Specifically, Dr. G posted today, “ The hypothesis that immunosuppression may protect you from severe COVID-19 is gaining traction. New data released on the 4th April 2020 from the UK’s Intensive Care National Audit & Research Centre suggests it may. When comparing 2249 patients admitted to ITU in the UK with severe COVID-19 the proportion of immunocompromised patients was 3.7x lower than the proportion of immunocompromised patients admitted to ITU with viral pneumonia (the comparator) between 2017 and 2019 (2.3% vs. 8.5%). This was a highly significant difference (p<0.00001).”

Dr. G’s full post link is here: https://multiple-sclerosis-research....vere-covid-19/

Stay safe everyone. Virtual hugs. Suebee

[ActiveMSers]

So much information is rolling in on COVID-19. Member Mary sent me this interesting video link...

Here is the link to the recording of an excellent webinar by Dr. Bowen at Swedish Medical Center in MS in Seattle. I encourage to view it. The first part is about the virus itself and the second part discusses the MS implications. Questions and Answers are last. Some people have had trouble viewing it. If they get the picture but no sound, fast forward to about 12 minutes into the presentation and it will start. The presenters were waiting for a few minutes for everyone to sign in.

https://zoom.us/rec/play/vMEtde-hqm4...=1585248727000

[Suebee]

MS Prof G explains safe level lymphocytes

If you are on DMT and consulting with your neurologist about continuing or postponing, Dr. G from U.K. explains in today’s post:

“I know that a lot of you are confused because some neurologists are saying you at high risk of severe COVID-19 if your [absolute lymphocyte Count] ALC is less than 1000/mm3, others like me are saying that you are only at increased risk if your counts are less than 800/mm3 and still others who are saying that you should only worry if your ALC is less than 500/mm3.

Apologies, about the confusion, but as with most things in medicine nothing is black and white; it is a soft call and advice also needs to be pragmatic and generalisable to the wider MS population. “

Prof G gives a more detailed explanation for those of you seeking a longer analysis with specific examples at his blog post here. https://multiple-sclerosis-research....phocyte-count/

From across the pond, I shout out a Thank you to Prof G for using his valuable time to help us all make informed decisions with our own drs with current available information about DMTs during this crazy time. His cogent posts give no empty praise but much reassurance about what can be understood. Dr. Birx please copy.

.

[Drillerdou]

Thank you Suebee, I check back regularly to see if there's anything new. Please be safe!

[Suebee]

Promising News: No reports of mortality in immunosuppressed

A few days ago An Italian doctor, Dr Lorenzo D’Antiga, published a peer reviewed article which states covid-19 to date has not shown severe disease in immune suppressed individuals and that this is consistent with past corona viruses. This should give some relief to your anxiety even though it’s early in this health crisis. I pray it is true.
Dr. D’Antiga writes,
“Unlike common viral agents (such as Adenovirus, Rhinovirus, Norovirus, Influenza, Respiratory Syncytial Virus), Coronaviruses have not shown to cause a more severe disease in immunosuppressed patients. For this family of viruses the host innate immune response appears the main driver of lung tissue damage during infection.
More importantly, reviewing the mortality and morbidity reports published on Coronaviruses outbreaks such as Severe Acute Respiratory Syndrome (SARS) that emerged in 2002, Middle East Respiratory Syndrome (MERS, still ongoing) and more recently COVID-19, no fatality was reported in patients undergoing transplantation, chemotherapy or other immunosuppressive treatments, at any age. Risk factors for poor outcome include advanced age, male sex and presence of comorbidities (obesity, diabetes, heart disease.”

Cite/Link to article :https://doi.org/10.1002/lt.25756
(To view click “About” left side and select “PDF”)

I hope you are all doing ok under these extraordinary circumstances. My area has recently become a cluster, causing localized concerns that the local food chain might be temporarily disrupted, not from lack of products but lack of staffing. Good idea to Stock up on food /medicine you need for a week or two as a safeguard. Stay safe, Suebee
P.S. Thanks Larry, I appreciate you all. This forum has been a bright light during some of my darkest times. I am grateful to belong to this community, and happy my contributions might be of use to it.

[AMFADVENTURES]

Wanted to say thank you Suebee for leading the Covid-19 information effort. We're very fortunate to have you around and I for one certainly appreciate you.

All of this got me to take a look at past blood tests which my HMO keeps meticulous track of and which my neuros run at least every six months after each Rituxan infusion. I did see that, going back 5 years, one of my immunoglobulin levels has continued to decrease to about 50% below normal minimum levels (B-cells?,) the other two they test for have stayed close to minimum.

I am exercising extra caution and although I am a little overdue for another infusion I will postpone until more is known about the course of this virus as I am doubly at risk for age and immunosupression. If my my MS flares up I would have to re-evaluate, but I don't expect that to happen as it appears that, after 2 or 3 infusions, B-cells can take up to a couple of years to regenerate.

Thanks again Suebee,
Larry

[Lmh]

Lmh

Within this article is a very detailed article from Australian neurologists in regard to COVIDMS-19 and MS. Worth the read.

https://multiple-sclerosis-research....s-so-sensible/

[Suebee]

Australia MS Neurologists issue DMT/ COVID19 Guidelines

March 19th Austraila MS org Published advice from a large group of independent neurologists on DMTs during the pandemic. Like all other guidance on this topic, it is rapidly evolving. It appears similar, but not the same as the ABN guidelines issued the day before. The Australian advice possibly put a slight more emphasis on the importance of consulting with your care team to help make the best choice for and a particular individual's circumstances.
It also echos advice given by ABN about self isolation. It states,
"Caregivers and family members who live with, or regularly visit, a person with MS should also follow [social distancing/ self isolation] to reduce the chance of bringing COVID-19 infection in the home"
This recomendation is a sobering reminder about what self isolation really means. It makes sense to me but it isn't always feasible. I cant do this because my hubby is still working outside of the home. I am both fearful for him and also for myself because he must interact with others. And I'm fearful for my children, because I would not want both me and my husband to be hospitalized at the same time if we both get seriously ill.
Please everyone, take all possible precautions. Stay safe. Stay strong. We are all in this crazy situation together.
Link to Australian MS Org Advice March 19 https://www.msaustralia.org.au/about...tion-people-ms Prior url]https://www.msaustralia.org.au/news-blogs/latest-news/advice-patients-multiple-sclerosis-and-related-disorders-regarding-covid-19[/url]

[Suebee]

ABN issues updated guidelines on MS DMDs

Tonight, hot off the presses, The Assoc. Of British Neurologists (ABN) issued updated guidelines from last week on MS DMTs during this pandemic.

Bart’s Blog posted it tont and reminds us that these guidelines will continue to evolve as the pandemic continues and doctors observe MS patients.

On Page 6 of ABN March 18th Guidelines it advises that
If you experience “mild cold symptoms” there is no need to stop your disease modifying drug. But if you have “serious symptoms of COVID-19” resulting in testing for virus or admission to hospital, the ABN recommends stopping your dmd injectable or oral treatment or delaying your next infusion” and communicating with your MS care team.
Link https://multiple-sclerosis-research....#comment-75505

Stay safe everyone.

[Suebee]

American Dental Assoc recommends no elective procedures

This morning My dental hygienist called me, and my 3 month cleaning (I started as a stay well measure on Ocrecous) is indefinitely postponed because of Recommendations issued by American Dental Assoc last night.
Emergency dental procedures still allowed. (Because of my former job life I cant help but point out This is great leadership on part of Assoc, but now we need federal leadership, esp. steps to protect solvency of small business owners like my awesome Dentist's office that serves an important role for our community. Just saying in case any policy makers wondering what's needed or what to do...)
Link ADA
https://www.ada.org/en/publications/...ive-procedures

[Suebee]

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." https://www.gov.uk/government/organi...health-england

[Suebee]

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. https://youtu.be/j55EG8QNP8E
Viki Posts links to yoga and meditation below video if you are interested.

We are in this together. Suebee

[Suebee]

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
https://youtu.be/6sjyx46UJ7I