More Answers About COVID-19 Vaccines and MS
A little over a year ago, I wrote about whether people with multiple sclerosis (MS) should get a COVID-19 vaccine. I was anxious to be vaccinated as soon as I could, but I was also concerned about how the vaccines would affect someone with MS.
Would the side effects be worse for MS patients than for healthy people? Would the disease-modifying therapies (DMTs) used to treat MS affect the ability of the COVID-19 vaccines to do their job, or might the vaccines actually exacerbate our illness?
Fast-forward to today, and it looks as if we have the answers to those questions.
Similar vaccine reactions
My first question was answered by a survey of 719 vaccinated people with MS conducted by iConquerMS, a people-powered research organization, that was published in the journal Neurology. The survey reports that there’s not much difference between the side effects that people with MS experienced and those reported by healthy people.
A reaction after the first shot was reported by 64% of people with MS. The most common reactions were injection site pain (54%), fatigue (34%), headache (28%), and malaise (21%). In a smaller group of people with MS who received a second shot, 74% reported similar side effects.
Interestingly, as illustrated in the chart below, the percentage of MS patients reporting a reaction was somewhat lower than the percentage reported by healthy people during clinical trials. This was particularly true regarding injection pain. (Maybe MS patients are just more used to getting stuck with needles.)
Efficacy depends on the DMT
The type of DMT an MS patient has been treated with can affect the ability of vaccines to protect against COVID-19. Most DMTs work by reducing the activity of the immune system, lessening the inflammation that drives MS. But doing this could also dampen the ability of the immune system to fight the SARS-CoV-2 virus that causes COVID-19.
The concern is primarily with anti-CD20 therapies — ofatumumab, ocrelizumab, rituximab, and fingolimod. A study published in the Annals of Neurology reports that after being vaccinated, patients treated with these DMTs were about 96% less likely to show an immune response to the virus than people not using an anti-CD20 DMT. But no significant effect on COVID-19 vaccine efficacy was detected in people treated with eight other DMTs, treatments that didn’t attack CD20 B-cells.
No evidence COVID-19 vaccines exacerbate MS
I have read anecdotal reports of people who have experienced MS flares after receiving a COVID-19 vaccine, but these seem to be pseudo-flares, related to the fever these shots may cause for a day or two. The vaccines are “not likely to trigger an MS relapse or have any impact on long-term disease progression,” according to experts with the National Multiple Sclerosis Society.
Should you get vaccinated?
I hope there is no one still on the fence about whether to get a COVID-19 vaccine. The timing of it may require a discussion with a neurologist, especially for patients being treated with an anti-CD20 therapy. (The National MS Society has an excellent list of timing considerations on its website.) But bottom line, the society believes the risks of contracting COVID-19 outweigh any potential risks from the COVID-19 vaccines, and that people with MS should be vaccinated.
I’ve had my two Moderna shots, plus the booster, and the vaccine didn’t impact my MS at all. And when someone we’d been in close contact with recently became ill with COVID-19, I was very glad to have the jabs.
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I have had m.s for several years, in the last 2 years my fatigue has become more severe, restless leg syndrome has become unbearable.
I had the 1st covid injection at the beginning of last year, exactly 1 month later without warning I collapsed and had a seizure, I was unconscious throughout.
The 2nd injection I had was exactly the same, it happened a month later, no warning just collapsed & convulsing.
I have had the most unbeaten headaches ever since, I suffer with migraine but these are by far much worse, weakness, vomitting.
I have lost my driving licence.
I have had no seizures since but I am on epilepsy medication for life.
I have lost my independence as the headaches make it impossible to go anywhere far.
To me I find it a coincidence that I should have a seizure exactly 1 month after both injections.
I have been constantly I'll since I had them.
I cannot see any improvement at all.
I do not want the booster as I am frightened it may happen again, no one can assure me it won't.
I'm very sorry you've had all of these problems and I hope that there will, in fact, be improvement for you. What has your neurologist said about these seizures? Does he or she think there was a connection to the vaccine?
I am fully vaccinated. I was a nurse before my MS progressed. I would be scared to go through Covid as I know ICU and intubation would be horrendousfor for me. I don't think the average person knows what is done to you, drugs given to you, and the potential for other problems. Ì am layinģ low. Lets pray this disease passes sooner than later. My side effects were as usual, lasted only a few days and were less with each vaccine.
Thanks for sharing, Leanne. It's useful to all of the others here.
I have RR MS.
I had 2 moderna vaccines and the moderna booster in Sept 2021. no problems at all with the vaccines.
How long should I wait until going for an additional booster?
Also, does it make sense to try a different manufacturer for the next one.
I'm glad you had no vaccine problems. Health officials in the US are reported to considering whether, and when, to make a fourth jab available to people with severely suppressed immune systems, which might be the case if you are being treated with Ocrevus, or one of the other B cell depleting therapies. These officials have said, all along, that you can mix manufacturers but, personally, I would stick with the same one.
I had the Moderna vaccine. When I received the booster, which was a half dose, I felt an increase in my MS symptoms for 30 days afterward. I also experienced new symptoms on my left side, which normally is my "good side".
It surely seemed as if the MS exacerbated my MS, scientifically proven or not. I do not take any of the DMTs.
I'm sorry you had the problems you had and I hope they've resolved themselves. Thanks for sharing the information. It helps us all to read the vaccine experiences of others.
I always agree silently,but I wanted to respond sinceI spent a useless month after the booster!
Either the shot reacted in some way as an allergy or it exacerbated my MS! Since MS holds so many mysteries it is difficult to validate. Either way, it can’t be just a coincidence that my problems started within hours after receiving the shot.I have had MS for 30 years. My exacerbations do not come as often as in the past.All of my symptoms were a combination of all the different exacerbations that I used to receive IV’s for to alleviate them. I did not have seizures, but you know how different MS is with each individual.Wishing you well.
Thanks for sharing all of that information. It really helps all of us to read the experiences of others dealing with COVID, vaccines, etc. I hope you're doing better now.
I’m glad so many had ok experiences with the vaccine but the booster wrecked me. I spent the night in the ER with a 103°+ fever, violent chills, and I lost control of my right arm. I thought I was either having a stroke or heart attack but the doctors assured me I didn’t. I was unable to walk and needed a wheelchair for over a week and the overwhelming fatigue didn’t start to wane for a couple of months. Considering the decreased efficacy for people on anti-CD20 DMTs (which I am on) I will need some convincing to get a 4th. I think researchers need to look deeper into what happened to people like me and I am not alone. I know someone else with MS that had the almost exact same reaction although luckily they recovered somewhat faster. On the bright side, I had an MRI to confirm no relapse and I’m happy to report no active lesions.
Thanks for taking the time to share all of that information. I'm sorry that you had those problems but I hope that your comments will be read by health care professionals who deal with MS to give them a better understanding of what's happening in the real world. I'll certainly keep them in mind when I write about this subject in the future.
I have had two shots of the Moderna vaccine but I am hesitant to get the booster. I have had difficulty with walking for many years which has progressed to using forearm crutches and using a wheelchair for any distance. It was after the vaccine that my ability to walk worsened significantly. Coincidence? Maybe. I certainly don't want to get the virus and risk becoming seriously ill. I also hope to keep walking as long as I can. Getting the booster is a tough decision for me.
As you can see if you scroll through this group of comments, there are others who are reporting similar problems. I'm sorry you've had trouble with the vaccines and it must be tough to decide whether to continue. If I were in your shoes, knowing that COVID-19 can do to an unvaccinated person, I think I'd choose to be as protected as possible. But, it's obviously your call. Have you discussed the pros and cons with your neuro and/or PCP?
I only received the first vaccine (Pfizer) back in March. I was very sick (fever, chills, nausea, abdominal cramping and distress) daily for a week or so. It moved to every other day after a week or so, but they would not give me my second jab because I still had a fever when I presented for jab #2. The distress moved to twice per week to once per week, to every other week, to monthly. I thought I was finally done, but had another night of “ups and downs” for no reason again in early December. I will not touch the stuff again - I recognize I may be an exception, but the vaccine just was not good for me. I look forward to watching the research for something else with adequate safety data (3 years of safety data is the standard) so I can safely vaccinate.
I'm sorry you had that reaction and I understand your reluctance to continue with the vaccine. Thanks for sharing the information and I hope that you'll feel better and also be able to avoid COVID.
"A study published in the Annals of Neurology reports that after being vaccinated, patients treated with these DMTs were about 96% less likely to show an immune response to the virus than people not using an anti-CD20 DMT"
Hi Ed, an important question about the above quote. I am not certain which study you're quoting here, but I believe the 96% less likely to show an immune response should really be, 96% less likely to show a humoral (antibody) immune response -- all the latest studies I've seen seem to indicate those of us on anti-cd20 medications get a robust immune response EXCEPT from B cells. Okay, so no antibodies... but a number of studies have shown those of us on anti-CD20 medicines do the same (or even enhanced!), sustained T-cell response as others. Since Omicron is good at evading vaccine-generated antibodies anyway, T-cell response may prove to be more important. So it is particularly important those of us on anti-CD20 medicines get the vaccine, given T-cell (cellular) immunity is proving important, and it works for us! "96% less likely to show an immune response" could make people wonder what's the point.
You are correct. I should have been more specific that it was an antibody immune response. There does seem to be a T-cell response for those using anti-CD20 meds but, from what I've read, there is some question about how robust that response is. You may have seen something that I haven't and I appreciate you pointing it out.
By the way, when I quote from a study I always link to it, or its abstract. So, if you return to my column and click on the link you'll see which study I quoted.
Dealing with SPMS and Hypothyroidism for 11 years now. I had the J&J vaccine last May with no side affects to speak of. Received the Pfizer booster December 2021 and had arm pain and lethargy. The fatigue lasted about 5 days. After the 4th day I developed Thyroiditis. Neck was swollen and sore to the touch, especially the Thyroid area. Swallowing became a little difficult at times and was hazy and out of sorts. The side affects started to alleviate on day 7. Advil helped a great deal, as the issues quickly resolved themselves by day 8. Certainly attributed to the vaccine.
Thanks for sharing all of that. Personal experiences such as yours add a lot to the information we get from researchers who publish surveys.