Register for "What You Need to Know About COVID-19 and MS" Webinar

[Seasha]

MSAA (Multiple Sclerosis Assoc of America) is hosting a free online program slated for January 25th, 2021 (this coming Monday) about Covid-19 and MS. There will also be a Q and A segment for asking questions!

About this event

MSAA invites you to stay updated on the rapidly changing developments around the coronavirus (COVID-19) pandemic and its impact on multiple sclerosis by watching this eighth installment of our ongoing webinar series.

MSAA’s Chief Medical Officer Barry Hendin, MD and the Chair of MSAA’s Healthcare Advisory Council Carrie Hersh, DO, MSc will present the latest findings on COVID-19 and up-to-the minute recommendations for MS care and overall health management. Also, MSAA has expanded the program’s Q & A session to allow more time for Drs. Hendin and Hersh to address your areas of concern.

You can register for this event by following this link- https://cc.readytalk.com/registratio...n=r66i43iifv7p

[Boudreaux]

Thanks for the info Seasha!

[pennstater]

I listened in tonight. Basic summary:

1. MS does not put us at any higher risk of severe Covid-19 infection/death
2. Since we are not higher risk, MS is not listed as a condition requiring elevated prioritization of vaccines.
3. In conjunction with the NMSS, the MSAA recommends getting the vaccine. The risks covid presents and potential long tail issues
4. Neither Moderna nor Pfizer/Biotech is a live vaccine, so should not put us at any higher risk than general public
5. B-cell depleting DMTs may have a reduced protective effect, to what extent, it is unknown.
6. As time goes on, and more becomes known and/or disease mutations evolve, it is feasible a booster may be needed.
7. Still use precautions after until more of the population is protected.

That was my takeaway. I tried to get answered if any of the DMTs are considered high priority by the cdc due to immunosuppressant properties, but didn't get it answered.

[Seasha]

I was going to tune in, but fell asleep , so thanks for the summary, pennstater!!

[Kimba22]

Thanks, pennstater.

Here the video if anyone is interested ~

What You Need to Know About COVID-19 and MS - Program 8 - YouTube

Thought this info was also worth noting ~

Infusion timing - No global recommendation so best to speak to your neurologist.

For their patients on Ocrevus and Rituximab - recommending vaccine 12 weeks after infusion, or infusion minimum 4 weeks after vaccination completed (to allow for immune response).

I tried to get answered if any of the DMTs are considered high priority by the cdc due to immunosuppressant properties, but didn't get it answered.

This was how they addressed that ~

(51:30)

Is being on an immunosuppressant therapy a reason for being bumped up in the line for vaccination?

This is pending current CDC guidelines.

The current guidelines state "or use of other immune weakening medicines," so seems kind of murky to me. I wonder if you'll need a script with your diagnosis when it's opened up for high risk conditions? I would think they would need some way to know if you really qualify.

They recommend that everyone go on their states' local and government websites to see where their state is in vaccination rollout, what tier they are on, what guidelines they have in place for certain conditions and certain immunosuppressant therapies.

(53:12)

A high level of disability creates a risk because of the disability.

The greatest risks aren't the MS, aren't the immunosuppressants, but the existing comorbidities, level of disability and age.


Conditions considered high risk by CDC https://www.cdc.gov/coronavirus/2019...20any%20age%20 with%20the%20following%20conditions%20are%20at,COP D%20(chronic%20obstructive%20pulmonary%20disease)

[Kimba22]

Is being on an immunosuppressant therapy a reason for being bumped up in the line for vaccination?

This is pending current CDC guidelines

The current guidelines state "or use of other immune weakening medicines," so seems kind of murky to me.

This better expains the answer given ~

The current guidelines are "based on what we know at this time, conditions might be at an increased risk.

There is currently limited evidence for use immune weakening medicines.

This is how high risk is being determined by the CDC ~

Scientific Evidence for Conditions that Increase Risk of Severe Illness

Updated Nov. 2, 2020

Updates to the list of underlying medical conditions that put adults of any age at increased risk for severe illness from the virus that causes COVID-19 were based on published reports, articles in press, unreviewed pre-prints, and internal data available between December 1, 2019 and October 16, 2020*. This list is a living document that will be periodically updated by CDC, and it could rapidly change as the science evolves. Severe illness from COVID-19 is defined as hospitalization, admission to the ICU, intubation or mechanical ventilation, or death.

The level of evidence for each condition was determined by CDC reviewers based on available information about COVID-19. Conditions were added to the list (if not already on the previous underlying medical conditions list [originally released in March 2020]) if evidence for an association with severe illness from COVID-19 met any of the following criteria:

● Strongest and most consistent evidence: Defined as consistent evidence from multiple small studies or a strong association from a large study,

● Mixed evidence: Defined as multiple studies that reached different conclusions about risk associated with a condition, or

● Limited evidence: Defined as consistent evidence from a small number of studies.

Qualifiers to previously listed conditions were added or removed if there was strong evidence to support that the condition be expanded. Conditions previously listed were to be removed if there was strong and consistent evidence demonstrating no association with severe outcomes. Based on this criterion, no conditions were removed from the previous underlying medical conditions list dated March 2020; however, in this most recent update in November 2020, pregnancy was moved from “mixed evidence” to “strong evidence.”

*Updates to smoking were based on evidence available between December 1, 2019 and July 20, 2020.

https://www.cdc.gov/coronavirus/2019...nce-table.html

So currently these medications are not listed as high risk, but that could change.

[pennstater]

Thanks Kimba, but still confused. From the list, this is in the section of mixed evidence, along with hypertension, Cerebrovascular disease, and Asthma. that are part of the CDC prioritizations. All I wanted to find out was where this list of medications resides.

Use of corticosteroids or other immunosuppressive medications

Case Series [67, 68, 69] Cohort Study [70, 71]

Is your understanding then from reading this, that only the conditions tagged with strongest and most consistent evidence are the ones that qualify as medical conditions prioritized in phase 1c of vaccine roll-out? Per the CDC, part of 1c:

• People aged 16—64 years with underlying medical conditions which increase the risk of serious, life-threatening complications from COVID-19.

https://www.cdc.gov/coronavirus/2019...endations.html

Thanks also for adding info on timing of vaccine for those on some of the DMTS. I know for Tysabri, it doesn't matter. For those on B-cell depleting meds, you need to review with your neuro.

[Jules A]

Thanks for the information! Although I have heard at this time they are not saying MS alone increases our risk of adverse outcomes with Covid I have to say I'm a bit disappointed people with MS aren't elevated on the list. Like seriously isn't just having freaking MS enough to give us a little nudge in the line?

[Kimba22]

Thanks Kimba, but still confused. From the list, this is in the section of mixed evidence, along with hypertension, Cerebrovascular disease, and Asthma. that are part of the CDC prioritizations. All I wanted to find out was where this list of medications resides.

Use of corticosteroids or other immunosuppressive medications

Case Series [67, 68, 69] Cohort Study [70, 71]

Is your understanding then from reading this, that only the conditions tagged with strongest and most consistent evidence are the ones that qualify as medical conditions prioritized in phase 1c of vaccine roll-out? Per the CDC, part of 1c:

• People aged 16—64 years with underlying medical conditions which increase the risk of serious, life-threatening complications from COVID-19.

https://www.cdc.gov/coronavirus/2019...endations.html

Thanks also for adding info on timing of vaccine for those on some of the DMTS. I know for Tysabri, it doesn't matter. For those on B-cell depleting meds, you need to review with your neuro.

Yes, that's my understanding because of how the question was answered ~ pending current guidelines. The current guidelines state might be at increased risk, not are.

Mixed evidence: Defined as multiple studies that reached different conclusions about risk associated with a condition.

When I saw my MS Specialist in mid December, she told me there was conflicting information about whether or not Ocrevus put patients at increased risk, and in her experience it hadn't.

At that time, she thought would be eligible sooner (not sure she knows my other pre existing conditions, since we've never discussed them), and said I could delay my January Ocrevus infusion. Of course, didn't anticipate there would be such a slow rollout.

Two weeks ago our state posted a timeline for vaccinations and high risks groups (which I qualify for anyway) aren't until May! So I had my infusion. I can get vaccinated in April, hopefully it's opened up to me by then.

Everyone should be having a conversation with their doctors if they are unsure when they are eligible. Of course, I'm curious how they'll make sure you are high risk. I'm already hearing some stories that some people I know didn't have to show anything proving they were an educator.

[Kimba22]

Thanks for the information! Although I have heard at this time they are not saying MS alone increases our risk of adverse outcomes with Covid I have to say I'm a bit disappointed people with MS aren't elevated on the list. Like seriously isn't just having freaking MS enough to give us a little nudge in the line?

Hi Jules,

I agree! In the webinar the explanation given was that Covid-19 hasn't been shown to increase disease in MS. Yet the symptoms can cause a pseudorelapse. So not only could you be dealing with the symptoms from covid, you could also have MS symptoms! I can barely move when I get a fever. It's bad.

My cousin has Type 1 diabetes, which is "might be" high risk. He just had half of one foot amputated and a toe on the other foot because of how covid affected his diabetes!

[pennstater]

Thanks Kimba. Interestingly enough, the Pennsylvania covid-19 site lists immunocompromised medications as part of their phase 1A rollout, which is the highest priority. Now if we can only see the list of meds that qualify. I have a neuro appointment 2/9, so will be asking then.

https://www.health.pa.gov/topics/dis...tribution.aspx

[Kimba22]

That's great! I think that's why they said everyone should check their state's Covid-19 vaccine website. Each state has their own plan. But, it only makes sense to me they should. I noticed some state's don't show when everyone will be eligible, just the current phase. I like the way your state's has their's formatted, it's easy to read.

Michigan's website doesn't mention "use of immune weakening medicines" specifically, but references the CDC link "People with Certain Medical Conditions." From what they did list, all the conditions are considered high risk, which is good news. But no one in it is eligible for a vaccine until phase 1C, which follows CDC recommendations.

IMO, your state got it right to put this group in 1A. Just makes sense to me the most vulnerable for severe disease should be first. My two twenty something nieces, who are PreK-12 educators, have already gotten their shots. Yet, doesn't seem like they've been too worried about getting covid these past months by their behavior. They also got appointments before my 95 year old MIL and parents. Just doesn't seem right.

Now if we can only see the list of meds that qualify

That would be definitely help!

Good luck with your appointment.

[smiles]

Thanks for the information! Although I have heard at this time they are not saying MS alone increases our risk of adverse outcomes with Covid I have to say I'm a bit disappointed people with MS aren't elevated on the list. Like seriously isn't just having freaking MS enough to give us a little nudge in the line?

I've had sinus infection that caused a relapse! I think I had covid last March. Since then, symptoms have gotten worse along with more disability & more symptoms.
The Covid virus may not be worse with us but it will absolutely aggravate the MonSter. I am worried the vaccine will also in the condition I am in.

[pennstater]

Hi smiles.

Sorry to hear. Any virus/infection/inflammation raise the risk of relapse, and even if it doesn't result in a relapse, can worsen symptoms until we recover from illness. I do hope you feel better soon.

The vaccine itself should not aggravate MS long term, as long as you stay away from any that are live. I know a few people who have had either the Moderna or Pfizer. Not much to note for first vaccine, and a range of experiences for the second shot. The people who were achy with low fever following the second, did have some symptoms escalate, but short lived 24-48 time frame.

I also do wish they had considered potential long term MS complications if one does get Covid-19 while also assigning vaccine priority. All the more reason to be extra cautious during this time.

Feel better smiles.

[smiles]

Hi smiles.
Feel better smiles.

Thanks.
I know it's supposed to be safe. I am just always the one in a million...lol