COVID-19 & MS DMDs

[Suebee]

Looks like we should all get an oppty to get the Covid vaccine within the next few months no matter which State! Been a long year for sure. I’m ready now for the vaccine. I feel very comfortable about the safety of the mRNA vaccines for immune compromised. For The Johnson &johnson I’m waiting to see what The MS society’s advice is on the vaccine for use in MSers. Here is a cut to chase easy to understand Vaccination Decision Guide for MSers (detailing DMTs) by Prof. G at Barts. Start getting geared up.....
https://docs.google.com/presentation...bead784124_1_0

[Suebee]

Larry, sounds like you have a great plan and it will mitigate exposure. This is a marathon and I’m convinced we need do our best to mitigate and have peace with whatever is right for ones family. Per some article suggestion in March, We assigned bathrooms to limit exposure there. There is suspicion that there is a fecal transmission route . We don’t share hand towels and we wipe down faucets, door handles, light switches often.
We switched to plastic cups and write name on cup. This prevents drinking from someone else’s dirty glass. I mostly use separate paper plates instead of communal serving dish. We change ac filters more often, wipe down car interior surfaces before use and after, carry hand sanitizer and neurotically use it after activity, use disposable food prep gloves when pumping gas, and we temporally wear mask inside home for a few days if we found ourself in situation where there was high probability of exposure. We close bedroom doors if inside. There is study that family members reduce transmission from infected member if wear masks inside. And we regretfully don’t eat inside restaurants as this seems to be a noted risk factor. Unfortunately, mask wearing is not enforced here and risky situations arise. TX just hit a 1 million cases milestone. I send virtual hugs to you all, and hope you are all able to celebrate and enjoy Thanksgiving with your families safely.

[AMFADVENTURES]

Hey Suebee, I've got one OTW to the house right now. She will have traveled by air for about 16 hours including layovers in airports. She is renting a car at the airport as opposed to our picking her up and she will be staying at an Air B&B as opposed to staying with us. She is coming over from the airport but will shower and change as soon as she gets here. And that's as safe as I can figure to make it. She'll only be here for 5 days so quarentining and testing are useless. Unless she was infectious before she left it's unlikely she will become infectious before she leaves again even if she did experience sufficient exposure to infect her. Obviously there is risk but I believe we've minimized it as much as possible and as you say, not seeing my kids is not an option.

In two weeks I'll have a daughter and family coming in for 3 days. We will follow the same proceedures. And a week after that, my son and wife arrive for a week. Same deal.

I also have a grand son coming back from college who will be staying with us. Fortunately he is not coming from a high Covid school or area. This one's a greater concern though as he will be here for 2 months and will no doubt be socially active. Not quite sure how we'll handle this one yet but I anticipate it will involve some of the above plus modified quarentining and posibly testing.

See anything obvious that I missed?

Good luck to all,
Larry

[Suebee]

Don't shoot the messenger .... my college daughter recently asked me about whether she should quarinteen and be tested before or after she comes homes for thanksgiving and even if she should stay at college. Gasp, I think I was in denial about risk, Covid cases are high on her campus, like many others, as well as in my community. I have low B Cells because of ocrevous, But my baby not coming home??? The best article I found about this was from Washington post https://www.washingtonpost.com/lifes...2d8_story.html

This is clearly a personal and emotional decision, but one needs to be fully informed about risks and options. In sum, children returning home from college need to have a plan to keep exposure risk low to themselves and family members. As painful as it is to acknowledge this risk and need to take protective measures, my family is working out details to welcome my daughter home this holiday. No surprise this will involve mask wearing, isolation/ social distancing, testing, and maybe eating on patio (possible in Houston area in nov). I’d love to hear your suggestions and tips how you all are addressing thanksgiving at your households. Stay strong. This will come to an end. And Be safe my friends, Suebee

[Suebee]

Warning - Increase rise of MSers with Covid19 in US! This is hard, but I think “pandemic fatigue” and confusing messaging has caused complacency. MSers, on DMDs especially, need to stay vigilant. On Wednesday,
Neurolgist Dr. Barry Singer in MO. Warns of much greater increase of Covid Among MSers, especially older non ambulatory https://twitter.com/drbarrysinger/st...479733760?s=20

[Suebee]

Important to understand DMD mechanism of action

Just what you all might like, a picture book on MS and Covid! Well, not entirely. This article gives detailed explanation about how each DMD for MS works and pros and cons during pandemic. each drug is discussed separately, so if you are seeking more in-depth info about your drug or benefits of switching DMD, this could be a helpful resource. Bonus, It does have good color illustrations for better understanding of this content. Note, because it was published 2 months ago, it doesn’t give clinical data observed in hospitals past 2 months.

Stated goal of article: in order “
to understand the risks posed to people with MS using DMT, it is crucial to understand the mechanisms of action, the impact of the treatments on infection-risk, vaccination responses and the mechanisms of pathology and immunity to [ Covid.
]

Prof G is one of authors but i don’t think I posted about it in this threAd.
Link article: Baker, D. Et al.
, The underpinning biology relating to multiple sclerosis disease modifying treatments during the COVID-19 pandemic https://www.msard-journal.com/articl...eTTmxA.twitter


Stay strong. Stay well my friends, Suebee

[Suebee]

Fingolimod discontinuation caution warning

A peer review article has been published detailing that a 57 yr old man with MS, contracted covid and for 3 wks had occasional fever and no respiratory symptoms.. But when he discontinued his DMD Fingolimod because his lymphocytes got too low, he had a severe increase in covid symtoms with signs of hyperinflamation syndrome in lungs. He was given methylprednisolone (80md/day for 1 week) and thankfully significantly improved and recovered. Although this is one individual, many neurologists are now advising that discontinuation of Fingolimod when a patient has covid should be closely watched.

Article on case study https://pubmed.ncbi.nlm.nih.gov/32644205/

Barts Blog Post on this issue https://multiple-sclerosis-research....and-mscovid19/

Beth Isreal Deconess in Boston, MA tweet to watch patients who are discontinuing fingolimod closely. https://twitter.com/BIDMCMS/status/1...309573127?s=20








.

[Suebee]

Vaccine readiness & extending DMD dosing

Limited but promising info has been published about results of the ocrevous drug trial II extension, which suggests the ocrevous dosing schedule can be extended without relapse so long as at least 3 dose cycles have been administered. A dosing extension would make it possible to repopulate sufficient B cells to generate an immune protecting antibody response to a vaccine. It was noted it also would allow for a "drug free" pregnancy.
Link to article available for about 2 months https://www.sciencedirect.com/scienc...4820303552?dgc
Link to dr G 's blog on these findings:
https://multiple-sclerosis-research....our-free-copy/

[Suebee]

MS Int’l Federation Updated DMDs / Covid

On June 17th the MS int’l Federation updated its earlier recommendations on MS DMDs during Covid. Update has Encouraging news for interferons, Copaxone, dimemythal fumerate, siponoid, teriflumonide. It raises concern about anti-cd20 therapies and Makes no observations about the rest due to lack of data. ( Note that , Different countries have differing views and always consult with your neuro about your specific situation)
Here is excerpt:
“● Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region. The following information should be considered during decision- making:
o Interferons and glatiramer acetate are unlikely to impact negatively on COVID-19
severity. There is some preliminary evidence that interferons may reduce the need for
hospitalisation due to COVID-19.
o The limited evidence available suggests that people with MS taking dimethyl fumarate,
teriflunomide, fingolimod and siponimod do not have an increased risk of more severe
COVID-19 symptoms or death.
o Therapies that target CD20 – ocrelizumab and rituximab – may be linked to an increased
chance of being admitted to hospital or requiring intensive care treatment due to COVID-
19. This preliminary finding requires further investigation.
o More data on the use of natalizumab, alemtuzumab and cladribine during the COVID-19
pandemic are required to make any assessment of their safety.
● People with MS who are currently taking ocrelizumab, rituximab, ofatumumab or ublituximab
and are living in a community with a COVID-19 outbreak should be extra vigilant and may want to consider self-isolation to reduce their risk of infection.
● People with MS who are currently taking alemtuzumab or cladribine and are living in a
community with a COVID-19 outbreak should discuss their current lymphocyte counts with their
healthcare professional. If their counts are considered to be low they should isolate as much as possible to reduce their risk.”

Link to MSIF PDF document highlighting June changes to DMD recommendations in yellow, May changes in green.

http://www.msif.org/wp-content/uploa...hallamends.pdf

[Suebee]

Appears risk higher for anti-cd20 DMTs

My philosophy is that Meta data and top notch scientists are our best hope to understand MS and Covid19. I’m sad to relay that very current thinking at this time is that anti-CD20 therapies increases your chance of getting COVID-19 and possibly severe COVID-19.

Prof G at Bart’s (my favorite smarty pants) explains, “This change [in thinkng] is based on data from the Swedish MS registry and the survey ...done in Iran. In short being on rituximab [and by extension orcevous] doubles your risk of getting COVID-19 and there is a suggestion that it increases your risk of getting severe COVID-19”.
Prof. G speculates it is because it prevents one from making immune protective antibodies to run of the mill corona cold viruses, which may offer protection from contracting symptomatic or severe Covid19.

But Before we all run from room, listen to Prof G’s pragmatic advice: “if you are already on an anti-CD20 therapy there is little you can do about your preexisting immunity to community-acquired coronaviruses; you either have immunity or you don’t. Similarly, you can’t simply reverse the action of anti-CD20 therapies it takes months to years to reconstitute your peripheral B-cell pool. This is why I am now recommending that if you are on an anti-CD20 therapy you be extra-vigilant when it comes to trying to avoid being exposed to SARS-CoV-2 (social isolation, personal hygiene and avoiding high-risk environments).”

Prof G further states, “ I am still not recommending shielding [UK term for staying inside at home with few exceptions* ] because even though there is about a doubling of the risk of getting severe COVID-19 (hospitalization) the affected people with MS have been making a good recovery. The main determinants of death from COVID-19 in people with MS are older age, advanced disease and comorbidities and not the DMT they are on.” Prof G notes the good news that the risk of acquiring Covid19 “in most countries”, which use anti-cd20 dmd, is low. (I guess that USA is higher risk than others at present )

Link to Prof G blog post quoted https://multiple-sclerosis-research....d20-backpedal/
Link to Prof G blog post related posted today https://multiple-sclerosis-research....make-a-summer/

* UK Govt explanation on “shielding” at risk people https://www.gov.uk/government/public...-from-covid-19

Stay well and safe, Suebee [virtual hugs]

[Suebee]

Vaccine readiness and Orcevous

Alright, Dave mentioned this issue in his posts. I want to put my head in sand and skip over issue , but I think it’s important to understand what drs are observing and speculating ...

Fact - orcevous / rixitaub can inhibit ones B cell response, and, therefore, logically prevent an antibody response. This negatively impacts “vaccine readiness” but Drs also speculate it might prevent those who are exposed to Covid19 from building an antibody response that would offer immunity from reinfection.

Observation - Prof. G at Bart’s posted today about a woman with MS on orcevous who recovered from a Covid19 infection after 10 weeks and later tested negative for the antibody, twice. Prof. G makes it clear that it is unclear whether this is due to false negatives or truly a lack of antibodies. Whether the woman has immunity to virus can only be answered by time.
Link to Prof G’s blog post https://multiple-sclerosis-research....diness-part-2/

Oh gosh, This is so tough to hear that if I’m unlucky enough to get Covid19, there is a possibility that my DMD might prevent immunity, and I could actually get sick again on the next wave!!!
However, we really don’t have many options at this juncture. For that reason, I suggest we all focus on clear facts that we know for sure: a woman on orcevous recovered from Covid19 infection and did not require oxygen therapy. She tested negative for antibody. But There are no established facts at this time about whether or not she has acquired immunity to future infection.
Friends, Stay well, keep safe, stay strong. Suebee

[Suebee]

ocrelizumab/ rituximab & covid good news

I’ve been hesitant to post recent conflicting information about covid and ocrelizumab and rituximab because it is so conflicting and speculative. I am not a science person and do my best to synthesize info I read but I welcome any and all comments or corrections to anything I post. (Hint hint all you scientists reading....) but as you know, this “novel” virus has left everyone speculating about risks and ways to mitigate.

So Here is hot of the presses is good news to savor from doctors in Spain that anti-cd20 treatments (ocrelizumab/ rixuximab) are safe drugs in patients with multiple sclerosis infected with Covid.

COVID-19 IN 7 MULTIPLE SCLEROSIS PATIENTS IN TREATMENT WITH ANTI-CD20 THERAPIES, Multiple Sclerosis and Related Disorders (2020), DOI : https://www.msard-journal.com/articl...20)30382-5/pdf

The article states “Even with differing clinical pictures, all presented favorable evolution, for which there are several hypotheses:
1. Patients treated with anti-CD20 may be capable of having a primary immune response in the initial phase of infection. Ocrelizumab and rituximab induce depletion of circulating CD20+ cells and not the B cells in secondary lymphoid organs, favoring an adequate immune response against primary infection.

2. B cells and immunoglobulin may not be absolutely necessary for viral elimination. Perhaps in some especially milder cases, innate immunity anti-viral T cells may be sufficient for recovery.

3. Several publications have suggested that selective immunosuppression prior to SARS-CoV-2 infection could benefit and even protect patients from its hyperinflammation phase, which is accompanied by a release of proinflammatory cytokines that can ultimately be fatal. It is hypothesized that the decrease in IL-6 releasing peripheral B cells could confer this protection to patients in the hyperinflammation phase.” (Footnotes omitted in this excerpt)”

Link to journal pre-proof article https://www.msard-journal.com/articl...20)30382-5/pdf

[Suebee]

Alemtuzumab patients get mild Covid!

Doctors in Spain find that Alemtuzumab appears safe to use as DMD during pandemic. It is a limited study and doesn't appear to address whether it increases chance of infection, but is reassuring. It states "Our data suggest that patients receiving alemtuzumab showed very mild symptoms of COVID-19. We speculate that immune reconstitution induced by treatment may induce positive changes in the immune system in the defense against SARS-CoV2. Further research about alemtuzumab and their role in COVID-infection is necessary to confirm these preliminary findings"
The article gives specific details about how it depletes B and T cells, as well as its use on more advanced cases of MS disease, and possible mechanism for why it might prevent severe covid disease. Link to article in english
https://www.ncbi.nlm.nih.gov/pmc/art...C7286822/#__ff
Relish this bit of good news! I hope this gives some of you some peace of mind. Virtual hug,
Suebee

[Suebee]

Interferon B as treatment for Covid19 ???

Prof. G at Bart’s in London explains for us lay people how interferon B might help treatment of Covid19.
He posted, “There is a question about whether interferon B can be used for the treatment of COVID-19. This is because interferons are anti-viral. However it is argued here that the dosing used in MS may not be high enough and that the high doses they suggest may cause side effects. ..[German scientists] are also talking about [using interferon B as a] treatment for severe COVID19. People with MS would be getting the benefit of prophylactic treatement. However, do people taking beta interferfon get COVID-19. The answer is yes. Do they recover? On the whole the answer is yes too, but that is the case for every one else on MS DMT unless you have the features associated with risk in the general population.”
Link to Prof G blog https://multiple-sclerosis-research....nst-mscovid19/

Link to German article in English https://www.thieme-connect.de/produc...55/a-1170-4395

[ActiveMSers]

Thanks for all the updates, Suebee! The Gavin Giovannoni article is expanded here if folks want to read it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7138156/