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  #11  
Old 03-17-2020, 11:54 AM
Suebee Suebee is offline
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Default 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

Last edited by Suebee; 03-19-2020 at 12:59 AM. Reason: Typo
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  #12  
Old 03-19-2020, 12:52 AM
Suebee Suebee is offline
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Default 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.

Last edited by Suebee; 03-19-2020 at 12:55 AM. Reason: Typos
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  #13  
Old 03-20-2020, 01:37 AM
Suebee Suebee is offline
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Default 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]

Last edited by Suebee; 03-20-2020 at 01:42 AM. Reason: Link
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  #14  
Old 03-20-2020, 11:45 PM
Lmh Lmh is offline
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Default 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/
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  #15  
Old 03-24-2020, 01:15 PM
AMFADVENTURES AMFADVENTURES is offline
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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
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  #16  
Old 03-28-2020, 12:59 AM
Suebee Suebee is offline
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Default 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.

Last edited by Suebee; 03-28-2020 at 01:06 AM.
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  #17  
Old 03-28-2020, 01:13 PM
Drillerdou Drillerdou is online now
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Thank you Suebee, I check back regularly to see if there's anything new. Please be safe!
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  #18  
Old 03-29-2020, 02:21 PM
Suebee Suebee is offline
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Default 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.

.
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  #19  
Old 03-30-2020, 04:48 PM
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ActiveMSers ActiveMSers is online now
Dave @ ActiveMSers
 
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So much information is rolling in on COVID-19. Member Mary sent me this interesting video link...

Quote:
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
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  #20  
Old 04-07-2020, 12:29 PM
Suebee Suebee is offline
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Default 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
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