Covid vaccine

[Susannah]

Hello!

I’m curious about people’s experience with the Covid vaccine. I’ve had ms for almost 20 years, was on Lemtrada trial 15 years ago, and haven’t had any ms symptoms in 5 years. I had the first shot of moderna vaccine a week ago and I still have muscle and joint pain, fatigue, brain fog, and I’m tripping and dropping things - feels like ms all over again! Anyone else experiencing this? Did it go away? I’m getting nervous because I’ve seen the other side of this disease and I do not want to go back there.

Thank you!

[AMFADVENTURES]

Hey Susannah,

I just recently got both Moderna vaccine shots. Other than a slightly sore arm the next day, I didn't notice any side effects from the first shot. I did feel pretty bad the day after I got the second shot but I had also exhausted myself on my bike before that so it may have been one or the other or a combination but nothing lingered in either case.

Apparently some MSers have reported something similar to what you are describing though. The Rocky Mountain MS center just put out some information on this that you should have a look at. Basically, they're seeing a pseudo relapse in some MSers that could be caused by the vaccines. Be sure to watch the YouTube video in the following link:

https://www.mscenter.org/education/p...e-march-1-2021

[Susannah]

Thank you so much! I wasn’t finding anything and forgot to check RMMSC. Very helpful explanation of the pseudo exacerbation effect of the vaccine.

“Pseudo” is what I’ve been hoping for, along with soreness from cleaning up all the broken trees from the last big storm. I’ll be sure to check with the doctor if it doesn’t resolve in the next few days.

I will say that experiencing the ms again has reminded me how incredibly hard it is to get moving and physically function when you feel like this... and how important it is!

Yesterday I had to bring out my old friends “acceptance and adaptation” when I realized I simply didn’t have it in me to go snowboarding as I usually do. So instead I did a slow ride in town on my cruiser bike. The rhythmic easy pedaling in the 70 degree sunshine was restorative for my body mind and soul!

[Susannah]

UPDATE: ms symptoms are still slowly resolving and my neurologist said I should NOT get the 2nd shot. It was a strong “no.” I’ll have antibodies tested in a week to see how much protection I have from first shot.

This is all so disappointing on so many levels. I think I need another cruiser ride.

[AMFADVENTURES]

Glad things are resolving, hope it was indeed pseudo. That got me to thinking, the RMMSC has their spring MS education summit coming up shortly and a good question for them might be whether or not they have run MRI's on people who reported flaring after the vaccinations and whether or not they saw evidence of lesion activity. I will definitely do that but it probably wouldn't hurt if a few other folks did too. Seems like it would be good to know with reasonable certainty that these are pseudo exacerbations. Glad you mentioned this. https://www.mscenter.org/education/s...hops/ms-summit

Also, couldn't agree more about the cruiser ride. I have found that a bike ride is frequently the best response to most of life's twists and turns!

Larry

[ActiveMSers]

Just got my 2nd Moderna shot and my experience sounds a lot like Larry's. First shot: a breeze, slightly sore arm. Second shot: the day of, no problems! I thought maybe I had avoided the dreaded 2nd shot blues (about 15% of cases). But... the next day I felt majorly poopy. Fatigue, weakness, tingling. Good thing I was at home with Laura! After a bathroom fall trying to pull up my boxers, I went comando for the rest of the day and used Laura's support to get on/off the toilet safely. Advil every 4 hours kept things for going nuclear. Today, going on a bike ride!

[Veronica]

Just jumping on here quickly to give a " Oh, poor baby" to you, Susannah. AND to pass on info my brother who is a researcher at UPMC has told me...that one has signifiant immunity by 12 days after first shot. I am hoping that you get good results from the antibodies test. But regardless, I say " What Larry said" about those cruiser rides.... keep pedaling away... good to the soul for sure

[MSLazarus]

Hey Susannah,

I just recently got both Moderna vaccine shots. Other than a slightly sore arm the next day, I didn't notice any side effects from the first shot. I did feel pretty bad the day after I got the second shot but I had also exhausted myself on my bike before that so it may have been one or the other or a combination but nothing lingered in either case.

Apparently some MSers have reported something similar to what you are describing though. The Rocky Mountain MS center just put out some information on this that you should have a look at. Basically, they're seeing a pseudo relapse in some MSers that could be caused by the vaccines. Be sure to watch the YouTube video in the following link:

https://www.mscenter.org/education/p...e-march-1-2021

Thanks for this post. I had a violent 10 day reaction to my second Moderna shot. Paralysis of left leg..great weakness, violent headache and fatigue and full body pain. That horrible Reaction has just ended. But frankly, being vaccinated is better than getting COVID- 19.

the violence of the reaction may indicate that I already had and recovered from COVID-19. Last year I started coughing in December and could not stop for 4 months. I developed shortness of breath that everyone could hear. All docs and tests found nothing. However, looking back I am wondering. And now, the dry coughing and shortness of breath has started again.

have been in touch with Brigham and Women’s MS clinic in Boston about what the researchers are doing and watching about the virus...anybody else see Weiner there? There is a new blood test called SPIKE COVID-19 test that is different from previous tests with the same name....?. Anyway, this new test distinguishes antibodies you may have from the vaccination you just got vs. antibodies from a previous infection. From the virus.

[Suebee]

Wow Susanna, I'm sorry to hear of your vaccine reaction. I hope you get some protection from tbe first one. Thank you for sharing this, I hadn't heard about bad MS reactions like you and MSlazzarus experienced. It's good to be aware of possibility rather than be surprised. Hope you continue to feel better.

[ActiveMSers]

From the MS Society... -D

People with MS are not at greater risk from J&J COVID-19 vaccine

April 13, 2021
On April 13, 2021, the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA) issued a joint statement announcing a pause in the administration of the Johnson & Johnson (J&J) COVID-19 vaccine. This pause is occurring to give experts time to investigate reports of an extremely rare condition, a type of blood clot called cerebral venous sinus thrombosis (CVST), experienced by six women among the 6.8 million people who have received the J&J vaccine.

It is very early in this investigation but, currently, it does not appear that there is any additional risk for this extremely rare condition for those living with multiple sclerosis. The National MS Society’s COVID-19 vaccine advisory group continues to monitor safety data as they become available, and we will swiftly communicate any potential safety concerns specific to those living with MS. Check out the Society’s COVID-19 Resource Center for additional information about COVID-19 and MS.

[ActiveMSers]

Pfizer vaccine is safe for MSers. -D

----------------

COVID-19 vaccination in patients with multiple sclerosis: What we have learnt by February 2021

Show all authors
Anat Achiron, Mark Dolev, Shay Menascu, ...
First Published April 15, 2021

https://doi.org/10.1177/13524585211003476


Abstract

Background:
Since vaccination against coronavirus disease 2019 (COVID-19) became available, risks related to vaccinating patients with multiple sclerosis (MS) need to be carefully assessed.

Objective:
Characterize safety and occurrence of immediate relapses following COVID-19 vaccination in a large cohort of MS patients.

Methods:
We assessed the safety of BNT162b2 COVID-19 vaccination in adult MS patients.

Results:
Between 20 December 2020 and 25 January 2021, 555 MS patients received the first dose of BNT162b2 vaccine and 435 received the second dose. There were three cases of COVID-19 infection encountered after the first dose. Safety profile of COVID-19 vaccine was characterized by pain at the injection site, fatigue, and headache. No increased risk of relapse activity was noted over a median follow-up of 20 and 38 days after first and second vaccine doses, respectively. The rate of patients with acute relapse was 2.1% and 1.6% following the first and second doses, respectively, similar to the rate in non-vaccinating patients during the corresponding period. Mild increase in the rate of adverse events was noted in younger patients (18–55 years), among patients with lower disability (Expanded Disability Status Scale (EDSS) ⩽3.0), and in patients treated with immunomodulatory drugs.

Conclusion:
COVID-19 BNT162b2 vaccine proved safe for MS patients. No increased risk of relapse activity was noted.


FULL RESEARCH: https://journals.sagepub.com/doi/ful...24585211003476

[ActiveMSers]

Opinion: This is the most dangerous moment to be unvaccinated

Opinion by Robert M. Wachter
April 19, 2021 at 2:20 p.m. MDT

The Washington Post is providing this important information about the coronavirus for free. For more free coverage of the coronavirus pandemic, sign up for our Coronavirus Updates newsletter where all stories are free to read.

Robert M. Wachter is chair of the department of medicine at the University of California at San Francisco and host of the podcast “In the Bubble.”

If covid-19 has taught us anything, it’s that nothing is straightforward. We know that people who are fully vaccinated are greatly protected against infection and serious illness and are far less likely to transmit covid-19 to others. The vaccines truly are a miracle.

But here’s the bad news: Life has become even riskier for unvaccinated people, particularly those who have never had covid-19. (People with prior infections fall into a middle category, since they are at least partly protected but still require vaccination to increase the level and durability of immunity.)

The reasons that the unvaccinated are at higher risk are biological, behavioral and political.

FULL ARTICLE: https://www.washingtonpost.com/opini...-unvaccinated/

[Suebee]

Hi, I'm on Ocrevous and was strongly urged by my neuro to get vaccine since a blunted response is better than not even trying. I got my first shot of Pfizer and had no problems other than a sore arm. The day after shot I got 1 small weird looking raised blister rash on my chest, and it resolved a few days later. Unclear if it is coincidental but I found on "Dr. Google" that the vaccine binds with "ACE2 receptors" and there are a lot of that kind of thing in our skin, leading some drs to speculate that some rashes which appear after covid vaccination are a result of this, and no cause for alarm. I'm due for second shot early May. Everyone I know that has gotten a vaccination has reported a bad day after second shot but resolution of icky symptoms within 24 hours. So I hope for best but will try not to be anxious if otherwise.

[Susannah]

After symptoms have gone away, consulting a second neuro, and much much thought, I’ve decided to get my second shot today. I’ve lost 3 close family and friends to covid and see other friends struggling with long covid. Besides my personal cost benefit analysis, I want to do my part to end this. I’m hopeful and bracing myself.

[AMFADVENTURES]

Good luck Susannah, hoping for no problems.