Can I Get a COVID-19 Vaccine If I Have MS?
Do you plan to get a COVID-19 vaccine? I do.
One is now available to some residents of the U.K., and approval in the U.S. of one or more likely will happen soon.
Though the U.S.-based National Multiple Sclerosis Society has said only that people with MS should consider getting a COVID-19 vaccine, the U.K.’s Multiple Sclerosis Society has issued specific vaccine guidance for people with MS.
A trio of COVID-19 vaccines
The vaccine approved by U.K. officials uses a messenger RNA (mRNA) model developed by the companies Pfizer and BioNTech. Two other vaccines are far along in the approval pipeline. One, produced by the company Moderna, also uses the mRNA model. The other, produced by the company AstraZeneca and the University of Oxford, is a viral vector vaccine.
All of these vaccine candidates seek to generate an immune response to SARS-CoV-2, the virus that causes COVID-19. But they work differently.
The mRNA vaccines use a laboratory-made genetic code of the virus to produce the antigens to create an immune response. These vaccines are not based on a live virus.
Viral vector vaccines use a weakened version of a virus to generate that immunity. It’s not the SARS-CoV-2 virus. Rather, it’s a weakened, harmless version of an adenovirus that causes the common cold in chimpanzees. It doesn’t cause disease in humans. It’s important for people with multiple sclerosis to realize that this is not the same as the live, or live-attenuated, virus vaccines that people with MS are generally advised to avoid.
How will the vaccines affect people with MS?
According to the U.K.’s MS Society, none of these COVID-19 vaccines are expected to cause a relapse or make someone’s MS worse. They’re also not expected to be dangerous to people who are taking disease-modifying therapies (DMTs).
On the other hand, the society’s website states that it’s possible that people on some immunosuppressive DMTs might have a reduced response to those vaccines, at least for a period after a vaccine injection.
It would be a good idea to speak with your healthcare team about coordinating the timing of DMT infusions with getting a COVID-19 vaccine.
Will you get a COVID-19 vaccine?
I plan to get inoculated with a COVID-19 vaccine as soon as I can, following approval in the U.S. President-elect Joe Biden and Vice President-elect Kamala Harris also have said they will get vaccinated, along with three of the four living former U.S. presidents. Former U.S. President Jimmy Carter, who is 96, issued a statement encouraging people to get vaccinated, but hasn’t yet said if he’ll get one, according to the Associated Press.
In the U.K., Prime Minister Boris Johnson has indicated he may receive the vaccine live on television, Forbes reported.
So, will you take a COVID-19 vaccine if given the opportunity, assuming your neurologist thinks it’s appropriate? Please share your thoughts in the comments below.
You’re invited to visit my personal blog at www.themswire.com.
***
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
About the Author
Comments
Christine
My neurologist highly recommended that I get the vaccine. Because I am on Ocrevus therapy, he previously advised me to get vaccinated no later than 6 weeks prior to my infusion or 6 weeks or later after my infusion. My next infusion is in early February, which implies I need to wait until later in March. I’m 66 and my husband is 70 and we both plan together the vaccine as soon as it is possible.
Gail B
I am definitely planning on getting the vaccine. And hoping my Neurologist agrees.
I am on Aubagio.My anxiety has been thru the roof since this began, causing me having several panic attacks. Praying there will be no problems with getting the vaccine, I am ready.
Ed Tobias
Hi Gail,
Me, too! But no anxiety attacks. I hope that yours ease.
Ed
Gail Bradstreet
My Primary Physician has said yes I should get the vaccine. Do trust him. Has been my doctor for many years, in fact he diagonals my MS. When I went to him with numbness, looking back on previous symptoms he had seen me for in the past, set me up immediately for an MRI. Heard back from him 3 days later & referred me to a Neurologist.. I'm 66 years, few underlying conditions & want this vaccine as soon as available. My primary Physician has said yes I should get the vaccine. He diagnosed my MS.
Ed Tobias
We think alike, Gail, and are both fortunate to have a PCP in whom we trust. I feel the same way about my neuro. I've been seeing both for many years.
Hope your new year is a good one for you.
Ed
marilyn
have you ever taken any disease modifying drugs? i have not. since i read somewhere that this virus crosses the blood brain barrier i have been scared out of my wits. i certainly don’t want COVID (i also have C.T.C.L. and C.O.P.D. and Chronic Fatigue Syndrome). one more of anything will surely do me in.
Sharon Hoover
My dr is switching me to Aubagio. I'm a little afraid of change! Any thoughts of this medication
Ed Tobias
Hi Sharon,
I used Aubagio for a couple of years. It's really easy, since it's a pill, and I had no side-effects. I've heard, however,that it's caused some hair loss for some people. I think that Aubagio was successful in slowing my MS progression, which is the important thing.
Ed
Carol
Hi Gail.
I too have been having anxiety attacks that are raising my blood pressure. I have never had this before and my BP is normally quite low. This has been a challenging time. For me, isolation in my house for so long has been so difficult. I am normally a social person. The world renown MS Dr. in Miami that diagnosed me 23 years ago told me to never take a vaccine, but I am thinking that surely I can take this one. I hope so since I am ready to get back to living life.
Ed Tobias
Hi Carol,
I have to jump in on this one. I'm very surprised about the Miami neuro's comment about vaccines. Maybe that was the way it was 23 years ago. However, the current advice from the National MS Society and the Consortium of MS Centers is that, with very few exceptions, vaccines are ok.
Ed
Guadalupe Nunez
Was that Dr Sheremata?
Carmine
Gail
For your panic attacks and MS I strongly suggest some kind of Mediation. It will help with both. Its not hard it wont take long and it will definitely help. You don't have to be good at it just do it . And remember its all about the breath...
Good Luck
Carmine
Deborah Meek
Thanks. My situation is similar. I am on Ocrevus & my next infusion is also in early February. I'm 68 & my husband is 71 & we plan to get the vaccine asap. If I can get it in the next couple of weeks, I may push back my ocrevus infusion to March since I'm usually pretty sick for about 2 months following my ocrevus infusion. As sick as ocrevus makes me, I'm still walking & it helps so I live with the ocrevus side effects.
Ty
This has really helped! I am also talking Ocrevus.My next infusion is February 22.
Emily
Hi Christine! Thanks for your comment. I am on Ocrevus too and I think I’m going to get the vaccine before my next infusion. Did you decide to get it before or after your infusion? Care to share your experience of getting vaccinated i.e. if you experienced any side effects, etc.
Thanks!
Lori
I'm 49 and have had MS for 15 years. My neuro has recommended I take the vaccine and I absolutely plan on doing that just as soon as it is available.
Jade Hartland
I'm 38 living in South Africa. I was diagnosed in 2015. I'm currently on Plegridy. We will probably only be getting the vaccine in mid 2021 here but I plan on getting it as soon as I can.
Diane Kramarz
If my neurologist says I can, definitely!!! I've lived most of 2020 in fear. I can't imagine doing that for the next few years until the majority of people worldwide are vaccinated.
Mark Walker aka MarkW
If you have MS and get to choose there are two types:
The vaccine produced by the company AstraZeneca and the University of Oxford, is a viral vector vaccine, which works differently to live-attenuated, virus vaccines. Viral vector vaccines use a weakened version of a virus (not the Covid-19/SARS-CoV-2 virus) to generate that immunity. Rather, it’s a weakened, harmless version of an adenovirus that causes the common cold in chimpanzees. It doesn’t cause disease in humans.
The Pfizer & Moderna vaccines are mRNA vaccines and use a laboratory-made genetic code of the virus to produce the antigens to create an immune response. These vaccines are not a live virus but use a laboratory-made genetic code of the virus.
It’s important for people with multiple sclerosis to realize that all these vaccines are not the same as the live, or live-attenuated that people with MS are generally advised to avoid.
Ed Tobias
Hi Mark,
Wondering why you copied and pasted this from my column into the comments section?
Ed
Kim Roden
After receiving a strange hearing test, ENT sent me for an MRI. Diagnosed at 67, much to my surprise. Yes, if I can get the MRNA vaccine. Not sure about the live virus ones.
Amanda
I just want to respond to Diane (and anyone else who is interested) about living in fear. I was diagnosed with ms this past April and I lived in utter fear that I would get covid and not survive it because of the disease modifying meds I’m on. Back in July, my fiancé who was 44 and perfectly healthy got covid. He had no underlying health issues and honestly I had never known him to be sick more than a day with a cold for the 4 years we lived together. He spent 4 weeks in the ICU and lost his battle to covid on Aug. 5. I tested positive for covid also but my symptoms were very mild. I loss my sense of taste and smell and had extreme fatigue for several weeks. I believe the disease modifying therapy I take (gilenya) kept me from getting very sick. We will never know why he didn’t survive it and I did, but please don’t think it’s a death sentence because you have ms. I lived in so much fear and I don’t anymore because it’s all out of our control what can happen. Be safe and take care!
Ed Tobias
Hello Amanda,
I'm so sorry about your fiancee. You have my deepest condolences.
I'm glad that your case was mild and there are those who think that some of our DMTs might help to lessen the severity of the virus. So, you might be right in believing the Gilenya helped.
Ed
Sandy Nickel
So very sorry for your loss! Early on I did read about DMT’s lessening the cytokine storm.
Susan Krzyzek
I’m so sorry for your loss. Thank you so much for your input.
Chrystal Jackson
I am so very sorry for your loss to this terrible disease. Prayers going up for you and your family. I have been devastated with having the MS and also taking Gilenya and trying to figure out if I should get the vaccine or not. Thanks for sharing your story and again I am so very sorry for your loss and condolences to you all.
Martinette Harmse
I'm so sorry for your loss, I can't even imagine what you've been through.
Let me please add, don't ever take COVID and MS lightly. I handled it very well, I almost thought it was too good to be true. A month and a half later I got a relapse and discovered that my MS has been progressing with a vast amount of speed. COVID is not a joke, it attacks your weakest part of your body and destroys it.
Please , please try your best to stay safe, we can't afford to get weaker than we already are. Where I could have more years to my life, my life just got shortened. Yes I won't stop living and I will always fight back, but this setback just broke my speed a little, but no worries, I'll catch up.
Ruth Bolec-Rutka
I am not sure if I will take it even if my doctor recommends this because it scares me that vaccine was made so fast also I heard several doctors state they will not know how long this vaccines lasts and of it will keep people from getting the virus. For now I stay in my home with my husband and have groceries delivered. My family and I have not been together to avoid me or my husband from getting virus since they work inside their work place. Its a hard decision for me. I have had MS since 2002 and take Naltrexone. I guess waiting is the best decision for me.
Ed Tobias
Hi Ruth,
Thanks for your comments and I have a few in response.
The COVID-19 vaccines may seem to have been rushed to recipients but more than 40,000 people participated in the clinical trials of the Pfizer vaccine and more than 30,000 in Moderna’s. There have been very few serious side effects reported from those trials.
Yes, it's not known how long the protection will last but that's the vaccine for the routine flu only lasts a year. We need to get a new flu show each season. So what if the same is needed for the COVID-19 vaccine?
Remember, by getting vaccinated you may not just be protecting yourself. Hopefully, if you're protected you're also protecting others from catching the virus from you.
You're helping everyone by staying home, as you're doing. Thank you. My wife and I are doing the same. But we want to be able to hug our grandkids again and get back to living. So, we're going to get jabbed when we can.
But, it's your decision and you need to do what's best.
Ed
CHRIS M.
QUOTE: (Ed) "Remember, by getting vaccinated you may not just be protecting yourself. Hopefully, if you’re protected you’re also protecting others from catching the virus from you."
May I offer a correction the vaccines being developed including the J&J per a recent podcast where the President of J&J made comments -- none of them prevent the vaccinated from catching COVID-19; but the vaccinated will not have symptoms when they do catch it after being vaccinated; and the vaccinated person asymptomatic can transmit the virus to another. It is widely known. J&J President was very forthcoming on at PODCAST where he was interviewed last November about this aspect of this particular virus (all versions not being developed). There are clear limitations; likely for a while; our new normal. In the meantime:
IF YOU GET VACCINATED ACT AS IF YOU CAN CATCH IT AND MORE IMPORTANTLY ACT AS IF YOU ARE INFECTED BUT ASYMPTOMATIC MEANING WASH YOUR HANDS, SOCIAL DISTANCING; AND WEAR A MASK VACCINATED OR NOT. GETTING VACCINATED MAY SAVE YOUR LIFE AND SAVE YOU FROM SYMPTOMS WHEN YOU CATCH IT (AND YOU WILL -- WE ALL WILL IN TIME) BUT YOU GETTING VACCINATED WILL NOT SAVE MY LIFE. IN FACT YOUR ASYMPTOMATIC STATUS IS A THREAT TO MY LIFE. Things will improve maybe over the next 3 to 5 years but we are not assured things will ever return to normal.
Ed Tobias
Hi Chris,
Thanks for your comments. My research, some of which is linked to in the column, showed that it's uncertain whether someone who is vaccinated with the vaccine will still transmit the virus to others. Thus, the general recommendation to continue to wear a mask and take other precautions even after you've been vaccinated. That's why I chose the word "hopefully" when writing "hopefully...you're also protecting others...."
I agree with you that it will be a long haul to recovery and that people should heed the advice of every health care professional to continue mask wearing and other infectious disease precautions for the foreseeable future. I'm sorry if I was unclear, or misleading, about that.
Ed
Túbal Villar Cibeira
Sounds like a rushed approval with all those unknowns.
With a slow vaccination, or a stop due to unforeseen side effects, we could be left with a bunch of undetectable super-spreaders.
Intuitively, an artificially enhanced inmune system attacking my myelin, doesn't sound great. Might also be that it fixes it... But no rush. I want more data.
Ed Tobias
Hello Tubal,
Thanks for your comments.
I understand your concern but I don't see where the approval was rushed. One of the vaccines was tested on about 30,000 people before approval and the other was tested on about 40,000. I'd rather take a chance of a side-effect that wasn't detected in those 70,000 people than chance being attacked by the SARS-CoV-2 virus that causes COVID-10.
Anna
You were not unclear or misleading at all.
Ed Tobias
Thanks, Anna. I try my best.
Ed
Rachel Taylor
More people will die if we don't get the country back to normal and open the economy up. Those of use with underlying conditions must protect ourselves but not force others to live as we do. This is unethical and selfish.
Marie
Rachel, you are the rare someone who thinks outside the "its all about me" box. There is no denying the tragic 'deaths' that are being experienced due to this Covid-Bat-out-of-Hell. But, also tragic are the deaths to peoples' life work and businesses, all attendant with unfathomoble 'side effects.' As we all know, Death isn't limited to just one form. We need to care about our neighbor's losses and recognize his/her mourning, as you, Rachel, unselfishly express. That is particularly so, since we certainly expect others to be concerned about our needs.
Jami
The experts don’t know if any of the vaccines prevent spread so getting one doesn’t protect other people. They also don’t know how long it lasts for. This is nothing like getting the flu shot every year since the death rate is much higher and the flu shot has science thrown at it to increase the chances of efficacy each time.
Ed Tobias
You're right. They don't yet know whether the disease will keep someone who is already infected with the virus from spreading it. But, they don't know that it won't.
Even if won't halt the spread, fewer people becoming infected means fewer seriously ill people filling the hospitals...straining them, and the health care providers in them, to the breaking point. The hospitals don't have ICU beds. What happens if you have a heart attack, a serious stroke or you're in a serious accident and the closest ICU bed is 50 or 75 miles away because your nearby hospital is full? If nothing else, preventing people from getting sick with COVID will help OTHERS to survive as well.
Ed
Marian
I agree!
Melinda Smith
I have never recovered from my 2nd Shingrex vaccine for Shingles . The first shot was ok but the second caused my MS symptoms to suddenly become much worse and the decline has never abated. As my NYU neurologist has said people with autoimmune diseases have been excluded from trials for Shingrex as well as the Covid 19 vaccines . He is advising against MS patients vaccines for now .
Ed Tobias
Hi Melinda,
I've received the first Shingrex vaccine but never had the second, so thanks for that info. Regarding the COVID vaccines, with over a million injections so far there don't seem to be any serious reactions, other than fewer than a dozen allergic responses. One would think that some of those million+ would be people with autoimmune diseases. NYU, of course, has a very respected MS center so, I'd love to know if your neuro has any specific cases he can cite of serious side effects related to any of the COVID vaccines and MS.
Ed
Charlize
My Neuro MS specialist from Weill Cornell MS Center in NYC advises to get the vaccine. One of the top MS centers in the world.
A very difficult, stressful decision for me, as I don't like vaccines at all, amongst considering the "unknown" part. However, I decided to get it and got the vaccine yesterday (I work at a hospital). I work with patients, but not specifically who have medical/physical problems; work from home right now, but not sure when I'd be asked to return in person, and my spouse has a job where he potentially could bring it home (in person, school). I, too, have had much anxiety about this, as we weren't supposed to even have availability of the vaccine for a while, so I hadn't put much thought in. Then, all of a sudden, the hospital said we must decide now, as they might not get more of the vaccine....
I took the vaccine yesterday. Some side effects, like headache, stomach upset (which I saw on Pfizer site is about 30% with clinical trials; interestingly, almost the same figure for the placebo group). I have a little bit of anxiety about it, but I honestly also felt relief, in watching about the horrible increased rates, hospitals over-stressed, etc. I have risks, such as obesity, which is a high risk.
An infectious disease specialist (and friend) told me to think of it like you would about insurance: Some feel better about full coverage, while others may feel there's not as much risk and prefer less insurance. All doctors do seem to say weigh the risk of COVID vs the potential risk of the vaccine, and feel the former outweighs the latter. But, each has the right to her/his own decision.
Also, re: "rushed" process, it was explained that normally it drags out due to things like finances; "billions of dollars" are going into the vaccine process, so there's a lot of red tape; with this one, due to the world pandemic, the red tape was cut. Also, whereas they'd normally wait to tally things up until after the trials were completely over, they tallied in more live time, as they went along. The doctors I know feel it's safe and the trials ran very well and perhaps even safer than normal, also that the efficacy rate is incredible of 95%; that we're not guinea pigs at this point as you (Ed) pointed out given the 70,000 plus subjects in the clinical trial going first (who were the guinea pigs in that regard). At this point, over a million received it.
I don't know if I'm trying to convince myself, given I just got the vaccine? But, I know when I see the news and thinks of the risks, I tend to feel some relief I got it. And, the more who get it, the quicker it'll resolve.
Ed Tobias
Hi Charlize,
Thanks for sharing all of that info. It's very useful to me, I'm sure the rest of us, and I agree with all of the advice you've received. I particularly like the insurance analogy, which seems very appropriate.
Please keep us all posted on how things go.
Ed
Kay
Hi I have had ms 28 years it’s been a battle but I’m 56 now and I too have lived in fear since March I would have the vaccine I hope it’s available soon for ms sufferers I also have asphophogus problems so I’m petrified as it’s a breathing problem when you get COVID and I have problems breathing at times here’s to happier times ahead x
Sherry
I was diagnosed with MS this year and am currently taking Aubagio. I am a nurse practitioner in an ER and am exposed to COVID daily. I will be receiving the Moderna vaccine next week. Am I nervous, yes. But I see what COVID can do everyday and feel the benefits far outweight the risks. I have researched the vaccine probably more than I should have and am confident in my decision.
Ed Tobias
Thanks for sharing this, Sherry.
Nobody can be blamed for being nervous about a new medication but, as you know, this medication was tested on tens of thousands of people before it was approved. Its potential benefits far, far outweigh its risks. The risks of our disease-modifying therapies for MS seem much greater to me.
Thank you, thank you, thank you for what you're doing everyday in the ER. You and the other health care providers who fight this virus are truly saints.
I hope you stay well and that 2021 will be a far better year for all of us.
Ed
Deanna
Thank you for posting. How did your vaccine go? Are you experiencing anything negative? Would you recommend for others?
Lisa O
I am on Rebif, has there been anything said that if you are on Rebif you shouldn't take the vaccine? I seen someone post elsewhere they thought this the case but I haven't seen any info. I work in a nursing home and we should be getting our schedule soon as to when we can take the vaccination. Would it be advisable not to take the Rebif the same day as the vaccination?
Ed Tobias
Hi Lisa,
This is a question best asked of your neurologist.
Ed
Cris
Hi Lisa,
Could you please share your experience after taking the vaccine? I am also on Rebif and am planning to take the vaccine once available. Thank you
Tanya
Please anyone who takes Rebif please share if you've gotten the vaccine. I take Rebif. I'm 41 and have had MS for 17 years. Thanks!
K Hodge
I use Rebif and I have has MS since 1999, I did get my first shot the day I did my Rebif and had no issues. My second shot is at the end of March.
Barbara lovelace
I have the triple odds against me.I not only have ms, but I have cad, afib, and chf.I had covid back in April I still dont have my smell or taste back.I have 1 Dr say get it and another say no.I don't know what to do. I'm deeply sorry for alls pain and suffering! Me,myself isn't scared, I've already went through the 5 stages of grivence
Ed Tobias
Hello Barbara,
I'm very sorry to hear of all that you've been through. Have you told each doctor what the other has said and asked why they're advising you as they are? Because you have several medical problems each probably has specific concerns, which you should know in order to make the best decision for yourself.
I wish you well,
Ed
Cyndi Hall
I am 47,am ER nurse, and I'm on Aubagio. It is my job to take care of and stabilize the sickest of COVID patients, along with the ones who come in just for a test (call your doctor for this, don't go to the ER).
My Healthcare system provides all of their frontline workers with the vaccine, and I signed up to get it the morning after I got the email. I've had zero aside effects, other than a little soreness at the injection site. Let me tell you, I've had flu shots that have left me more sore.
While we can't predict who will and won't have side effects, we also can't predict how contracting COVID will effect us. But aren't we used to living unpredictably?
For those of you who fear it, please don't. I got the Pfizer vaccine yesterday morning, and I'm just fine.
It's worth noting that an hour prior to my appointment I took ibuprofen 600mg and Benadryl 50mg (don't drive if you take this!) to help ward off any side effects. I'm not recommending this to anyone; you should discuss that with your doctor.
Good luck and stay safe!
Ed Tobias
Hi Cyndi,
Thanks for providing that very useful information. I hope that it encourages others with MS to take the vaccine.
It troubles me to hear of health care workers who either say "not yet" or "never" when asked if they'll be vaccinated. You all are angels, especially those who, like you, are working in ERs or ICUs. I can't understand why some are so scared of this, potentially lifesaving, medication.
BTW, back in the dark ages, in my late high school and early college years, I volunteered in the ER of a hospital in mid-town Manhattan. Later, I was hired as what was called, at the time, an ambulance attendant. (Today's EMT but with far less training.) Quite an experience.
Stay safe. Stay well.
Ed
Kelly Rowe
I am 43 years old and have had MS for 30 years. I was diagnosed at the age of 13! I've been scared many times in the past 30 years but not about getting the vaccine. I live in Washington state, and my parents live in Maryland and are in their early 70s I would get the shot tomorrow if it meant being able to fly and see them without getting them sick or getting sick myself.
Ed Tobias
Hi Kelly,
I'm 72 and live in Maryland. So, feel free to call me Dad :-). I would get the shot right now if I could. Not only would it protect me, by doing that I'm - hopefully - helping to keep this virus from spreading.
Ed
Karen N
I'm in the US. My neurologist said the vaccine might not work because I am on Ocrevus. I discussed with her delaying my Dec infusion and getting the vaccine when it is my turn. She said to take an antibody test a few weeks after the second shot to see if it worked. The vaccine won't harm but might not work.
Ed Tobias
Hi Karen,
Thanks for your comments. The concern about Ocrevus is not that the COVID vaccine won't work, but that it will be LESS EFFECTIVE. Of course, your own neuro should guide you but here's what the MS Society in the UK has to say about Ocrevus:
"Some DMTs might reduce the effectiveness of any vaccine because they prevent the immune system from mounting a complete immune response to the vaccine. Therefore, the COVID-19 vaccine might be less effective for people that have recently taken or are taking certain DMTs.
Overall, it will generally not be advisable for people to substantially alter their MS treatment in hopes of increasing the efficacy of vaccines, because the potential harm would outweigh the potential benefit. Even a reduced response is likely to be better than none, so you should still get vaccinated even if on these therapies."
You might want to ask your doctor about this.
Good luck whatever you decide.
Ed
Heather Robinson
Hi! I was diagnosed at 40 with MS—just last year, December 22nd. I didn’t even ask Santa for it, but throw in Covid and it’s been quite a year. With so many unknowns and my head swirling with information about all of the DMT’s and Covid—I opted for Copaxone because I didn’t want an immunosuppressant. However, after a recent appt my neuro feels I need a more aggressive approach, bladder and mobility. I’m planning to switch to Ocrevus in February. It’s been such a balancing act of knowing what to do with a new rock your world diagnosis aligned with a rock everyone’s world virus. I know if I got the green light, I’m all about a vaccine! Also, my family got Covid last month—despite our best efforts—however, out of 6 people at Thanksgiving dinner—I was the only person not to test positive (two negative tests, no symptoms, no antibodies) which is not my norm. I catch a cold even if someone thinks about sneezing...so I’m curious if Copaxone could somehow be responsible for me not getting it? I didn’t go home for Christmas, because despite my optimistic theory—I didn’t want to tempt fate. Thoughts?
Ed Tobias
Heather,
There have been some reports that the interferon MS medications may have some impact on COVID susceptibility. But, I wouldn't count on it. My wife and I are staying as close to our apartment as possible, trying to avoid almost all contact with others. We've given up traveling from MD to FL for the winter and spent Thanksgiving alone. We, also, don't want to take chances.
Ed
Jan Coleman
I am 69 and have been well with MS and taking Betaferon for a long time. Will a covid vaccine be safe? Thank you.
Ed Tobias
Hi Jan,
Everything that I've read says that getting a COVID vaccine will be safe. I'm 72 and I intend to get one as soon as I can. What does your neuro say?
Ed
Paul Johnson
I understand the nervousness of the vaccine. I’m a respiratory therapist and I have seen covid face to face and up close and personal. With that I’m on capaxone 3x daily. To be honest I’ve had reservations as well to be honest. Now there is a mutated form of covid as well. I think we all will be okay taking it. All we can do is do our best and pray the good Lord protects us as we do our part. Be safe everyone.
Ed Tobias
Thanks for your thoughts, Paul. Comments from a health care professional who also has MS are extremely valuable. You, and the others on the front lines, are angels.
Ed
Özer
Hı..thıs ıs my fırst message..have you any idea ınactıve covıt 19 vaccıne for people wıth ms that use other countrys turkey brazıl...thank you
Ed Tobias
Hello Dr. Ozer,
I haven't heard any information other than what's happening in the US and the UK. However, this information may be useful to you:
https://multiple-sclerosis-research.org/2021/01/uk-covid-vaccine-update/
Ed
Patty R.
I take the infusion Trysabi, my neurologist said to me,” ask me when it’s available for the public” to get the vaccine. I kinda thought the answer I would get was to get the vaccine as soon as available!
Ed Tobias
Hi Patty,
I would have thought the same...but I think that many neurologists are buying time before making a recommendation. They may be waiting for a committee of the National MS Society in the US to make its recommendation...which is supposed to come sometime this month.
Ed
Erin
Hi all, Dx’d w/ MS at 16, 44 now. I’m curious if anyone has had this experience/anything similar? 15 years ago I was using the injectable, Copaxone as my DMT. I became pregnant & stopped using Copaxone for my entire pregnancy. After giving birth, I went back on Copaxone, injecting myself daily w/o any issues until the 7th day after delivery when I injected the Copaxone & 15 mins later my body went into anaphylactic shock. I had to go to the ER bc my throat closed, tongue swelled up & all that good stuff! Has this ever happened to anyone? Do you think I’ll be able to get the vaccine?
Deirdre warren
That side effect is supposed to only happen once but not so severe you need the hospital according to the Copaxone insert and my ms nurse.
Barbara Anderson
Ed Tobias ~ Do you have any info on the committee's recommendation?
Ed Tobias
Barbara,
I wrote this column about three months ago. Since then I've had both jabs of the Moderna vaccine and I wrote about that, with updated links to information, in January and in February. Here's a link to the latest info and recommendations on the National MS Society's website:
https://www.nationalmssociety.org/coronavirus-covid-19-information/multiple-sclerosis-and-coronavirus/covid-19-vaccine-guidance
Ed
Michelle L.
Thank you for this great article! I’m also appreciative of the comments from readers, as well as your replies! I’m 51 and was diagnosed with MS in 2017. I take Gilenya. I have asthma as well as MS. Obviously I’m terrified of getting COVID. I’m one who’s willing to take vaccines in general, if my dr says it’s safe for me to do so. I’m really hoping that the vaccine for COVID is safe for me to take. The research I’ve done all says that the vaccines are not “live,” so I think it will be ok. Thank you to all the frontline workers - especially those who have MS! I’m waiting to hear from my neurologist, but if he gives me the “ok,” I’m definitely ready to get vaccinated. I want to hug my Mom so badly!!
Ed Tobias
Hi Michelle,
Thanks for your thanks, and also for your comments. Yes, it seems the benefits of the vaccine far outweigh its risks and that the risks don't appear to be any worse for people with MS.
Please keep in touch and let us all know how things progress for you.
Ed
Linda Francis
Hello Ed. I'm 65 66 in Feb. I've had MS symptoms since I was a young teenager. Yet,I had cancer & ms all at the same time. My gyn operated on me a couple of times for cancer and when i was recovering my gyn told me to have an MRI etc. from my family doctor or Neuro. checking to see if I had MS. I did, and had Relapsing/Remitting at age 38 That lasted many years as symptoms went into progressive in my late 40's early 50's. I have primary progressive now. I suffer lower back pain 24/7 since age 40-----Self cath since age 40-numbness in feet mostly- Choke a lot since mid 30's worse now. Memory pblms when taalking since 40's. I'm thinking of getting a Covid 19 shot by the pharmacy I go to for my meds. When I received my first flu shot 15 years ago,I had problem symptoms. I don't get them now when I receive a shot. Yet,I'm
hoping when I receive the Covid Shot I have minimal or no symptoms.
Ed,what is your personal ideas about what I wrote?
Also,when I get this shot I will give daily side effects if any to this message board. I'm a Cancer survivor,Have a Mitral Valve Prolapse & Multiple Sclerosis. I'm 66 in February and not that that matters but I thought I'd tell you.
I will look forward to Ed's thoughts & my Covid -19 shot.
I WILL LET ALL KNOW my symptoms and feelings. Thank you for reading :)
Lin
Ed Tobias
Hi Lin,
Thanks for sharing all of those thoughts. I'm sorry you've had all of those medical problems but you sound like you're doing quite well at age almost-65.
Yes, please let us all know whether you have any reaction to your shot. Which of the COVID vaccines did you receive?
Ed
Amy
I have MS and have been taking Copaxone for 10 years. I am also an RN and got my first Moderna COVID-19 vaccine 1/6/21. I was nervous but after reviewing pros and cons felt it was the best choice for me to have the vaccine rather than COVID. I had a sore arm but otherwise feel great.
Ed Tobias
Thanks for sharing, Amy. Please keep us all posted on any reactions, particularly following your second shot.
Ed
Susan Robles
i have had ms now 20 yrs now. for the bulk of that time i have been taking copaxone shot daily. never went to 3x weekly, no other ms meds. the only other med i take is for high blood pressure. i asked my primary doctor should i take covid shot, he told me to ask my neuro doctor, which i did. he told me to ask my primary doctor.i told him i did. it seems like both doctors do not want to give an answer. i feel stuck and scared.
Ed Tobias
Hi Susan,
That buck-passing is horrible. I suggest you read my column that was published here today. It outlines the National MS Society's COVID vaccine recommendations. In short, they recommend getting the vaccine. Here's a link: http://multiplesclerosisnewstoday.com/columns/2021/01/12/covid-19-vaccine-recommendations-ms-society/
I hope it helps,
Ed
Bojana
Hi Ed,
I am new to this column and all your info. Thanks so much for having this information available for us.
I am 52 and have had MS for over 30 years. I have taken Rebif for almost 19 yrs (corresponds with my older son's age).
I work in a hospital in Ontario and received my first dose Jan 4th. My second is due Jan 25th. I was fine afterwards, sore arm. I delayed taking my rebif that day (I normally take MWF) until T (and then Th and S). I normally have flu like symptoms 50% of the time I take the Rebif - this was all the same, more of less.
I did notice though that I was having increased tingling on my left side/limb. I have a residual patch of numbness on my L thigh normally. This started a few days ago. It did worry me initially. However, it is holding steady. It's not affecting my gait and seems less prominent today.
I am going to have my second dose on Jan 25th. I have called my neuro for a phone chat but am anticipating that he will have limited additional info to share.
Thank you all for sharing your stories and thoughts and hopefully my input will comfort others.
Ed Tobias
Hi Bojana,
I'm glad the info here is useful to you and thanks for sharing your experience with the COVID vaccine. Reading personal experiences helps us all to make better decisions.
BTW, my neuro has confirmed that there are no contraindications for me.
Best of luck and please keep us posted on how things go after #2. I'm hoping the shot will be available to my wife and me in early February.
Ed
Kiavoosh De Van
Thank you for all information you shared. Could you please let us know how you’re doing after the 2nd doses and how was the second shot
Overall.
Gilad
Hi,does anyone know wether you can recieve the second Pfiser vaccine (after recieving the first one) during a relapse? Thank you.
Ed Tobias
Hi Gilad,
The most recent guidelines from the National MS Society in the US note that the COVID vaccines may cause someone to spike a fever. The question is whether that fever would worsen the relapse. I suspect that it would but it's a question best asked of your neurologist. Here's a more recent column that I wrote about the guidelines: http://multiplesclerosisnewstoday.com/columns/2021/01/12/covid-19-vaccine-recommendations-ms-society/
Ed
Deirdre warren
December 1964 I became type 1 diabetic due to contracting mumps. 1999 diagnosed with MS after receiving a flu shot. 2001 another flu shot gave me a ms relapse. Then went on Copaxone. Now on Glatect because our Canadian province wanted a cheaper version. Have RRMS. Am afraid to have covid vaccine as my autoimmune conditions came from viruses as verbalize by my neurologists.
Ed Tobias
Hi Deirdre,
Thanks for your information. As reported in a number of my columns, no connection has been found between the COVID vaccines and MS. However, the COVID vaccines can create a fever for a day or two. As you probably know, the heat of a fever can trigger a psudo-flare, which ends when the fever subsides. (This is the same as one being triggered by a hot summer day). I wonder if this is what happened to you with your seasonal flu vaccines.
Ed
Candy
I have had MS since 1978. I have RRMS. I have been on Betaseron for 27 years. My MS has been totally stable since being on Betaseron. Before Betaseron I would have about 6 exacerbations per year with total body numbness, 2 bouts of optic neuritis, and 1 experience of dropped foot. All of this disappeared as soon as I started Betaseron. Unfortunately, I have developed some allergies and have has severe allergic and anaphylactic reactions to prescription drugs - all happened while I was in the hospital. First , I am allergic to all fish products due to a reaction to the IVP dye, I developed a severe reaction to ACTH in the hospital after my spinal tap to Diagnose my MS. That was caused by a severe allergy to pork products and medication with pork base. I developed a severe diatonic reaction to Regland and Compazine in the hospital after a severe bout of Vertigo- now I have Transdermal Scop patches - which I have rarely used since starting Betaseron. I am terrified to get COVID or the vaccine since I learned that all vaccines use an additive- squalene- derived from shark liver that enhances the vaccines effect. Since I am allergic to all fish due to the iodine, and sharks are fish, and my reactions to all these other drugs, what should I do? Please send me an email response.
Ed Tobias
Hi Candy,
Of course, you should speak with your neurologist about this.
However, below is a link to a fact sheet on Moderna's website. If you scroll down you'll find a list of ingredients. You can probably find a similar fact sheet on the Pfizer website.
https://www.modernatx.com/covid19vaccine-eua/eua-fact-sheet-recipients.pdf
Ed
Tanya
Please anyone who takes Rebif please share if you've gotten the vaccine. I take Rebif. I'm 41 and have had MS for 17 years. Thanks!
Corinne
I had this plague in October 2020...before anyone knew anything about it. I survived. Have had MS since 1990 and also have COPD, high blood pressure, osteo arthritis and chronic bronchial issues. There is NO WAY I would ever get this shot. Ever!! Why would anyone get a vaccine that has a recovery percentage between 96-99%. No thanks. I will most definitely pass on this. And nothing or no one will EVER change my mind.
Ed Tobias
Corinne,
Thanks for sharing your thoughts.
I'm not sure what you mean when you use the term "recovery percentage." All vaccines lower the chance that you will be infected by a particular virus, or reduce the chance that an infection will result in a serious illness. All of the COVID-19 vaccines are effective at doing that (more effective than vaccines for many other viruses) with very few reports of serious adverse reactions.
Obviously, I won't change your mind about the COVID vaccine, and it's your decision to make, but I hope that other people won't be influenced by what you've written.
Ed
Ed
Karen Heintz
I have had relapsing/remitting ms for 40 years. I am not on any DMT. I wondered if people who use this site and are not on a DMT could comment about their experiences with the covid vaccines? Did anyone have a significant exacerbation? Any side-effects outside of the normal and expected?
Thanks very much,
Karen
Karen Heintz
Update: I had my first vaccine dose yesterday. I had a headache, chills and was achey about seven hours after the vaccine was administered. Also extremely fatigued. I slept for eleven hours and woke up today feeling much better. I have the slightest of headaches, but for the most part feel back to normal. It is such a relief to have the vaccination process started. I know the second dose may be more difficult, but this is well worth it.
Ed Tobias
Hey Karen,
Thanks for the update. I' glad your reactions have been slight.
My wife and I had Moderna #2 today. Now, at 5 1/2 hours after the shot, I feel a little achy and tired but I don't know if that's my MS or a reaction to the shot. I'm planning to write a report on shot #2 for my MS Wire column that posts Friday, 3/12. Hopefully, I won't have much to report. :-).
Ed
Akanksha
I am a MS patient since 2012. I want to know should I take covacine of corona Or not.
I'm taking dyfira medicine right now.
Please suggest me what should I do, I'm confused.
Ed Tobias
Hello Akanksha,
I'm not a medical professional so I can only advise you to read the advise of the MS organizations by using the links in my column and to speak with the doctor who is treating you about this.
Ed
B Richards
My older sister has MS. I was HORRIFIED to hear that she got the vaccination this past week. Nobody with pre-existing conditions should get this. Healthy people are having fatal side effects so to get this vaccination with an already compromised system, is foolish. This drug is strictly experimental right now so to encourage people to get it, should have consequences. This should be on a volunteer basis only. It takes at least 5 to 7 years to test a drug for side effects. The FDA hasn't approved this. Hello? I won't be bullied into taking this vaccination. COVID has a 99% survival rate and the shot only has a 66% rate of effectiveness. Why would you get vaccinated with the odds. I'm scared to see what will happen with my sister after the second dose. I've already lost one sister to cancer, I don't need to lose another. You do you. I'll do me. Don't say I need to do my part. I'm so sick of this gaslighting by people in support of the vaccine because they choose to live on the side of fear that is swallowing them whole to the point that they are jeopardizing their own health knowing that there are no guarantees with this "experimental" vaccination.
Ed Tobias
I'm sorry you feel this way. It's your choice, of course, but some of the information that you present here about the vaccines, which are FDA approved, were tested on tens of thousands of people and have now been given to more than 1.15 BILLION people around the world, is incorrect. (Here's an explanation of the testing process: https://www.umms.org/coronavirus/covid-vaccine/facts/testing).
People with preexisting conditions are more likely to become seriously ill with COVID-19 than those who are in good health. People with MS have immune systems that are overactive, not reduced. (http://multiplesclerosisnewstoday.com/columns/2021/03/16/ms-immune-system-covid-19-suppressed-compromised/).
Some of the medications used to treat MS, however, do reduce the ability of our immune systems to fight some infections for a period of time, thus the need to coordinate the timing of a COVID-19 vaccination with certain DMT treatment schedules to allow the vaccine to be as effective as possible. Bottom line is, the vaccines are considered safe and MS organizations around the world recommend them. (http://multiplesclerosisnewstoday.com/news-posts/2021/03/02/actrims2021-covid-19-vaccines-safe-for-ms-patients-minimally-affected-by-dmts/).
I assume your sister did her own research before getting vaccinated and that she determined it would not jeopardize her health. I hope the side-effects of her second shot will be minimal, as they were for me and my wife. I think they will be. (http://multiplesclerosisnewstoday.com/columns/2021/03/04/covid-19-vaccine-no-harsh-side-effects/).
Ed
Peggy Hays
Just FYI, I am 78 yrs old and have SPMS, I had the vaccine and promptly had an exacerbation like I haven't had in years. And it isn't resolving as well as I usually have in the past. I also acquired a second "tinnitis" sound....don't know if that is in any way related to MS.
Ed Tobias
Hi Peggy,
I'm sorry you've had these problems. Did you have a fever as one of the side-effects of your vaccine? If so, it's quite possible that it sparked your exacerbation - as a fever generally would for someone with MS. Have you talked with your neurologist about this?
Ed
Gyorgyne Erika Csoka
hi, my 33 years old son has MS, but he didn't have any problems at least for 5 years, he got first pfizer and after it he started to numbing, he became very tired, he hardly could go to work! They sent him for MRI and yes, he got a new inflammatory! He doesn't want to go for second vaccine! What kind of vaccine certification he can get and from who? Can someone force him for second vaccine, if he become sick about it for long time? He can get any support from government if he can't go to work?
Ed Tobias
Hi Gyorgyne,
You've asked a lot of questions but, unfortunately, I don't have good answers for any of them. There could be a number of reasons for your son's problems. The COVID vaccines can create a temperature, like having a cold or the flu, and a temperature can cause an MS flare. Or, it could be something else. Your son's neurologist would be a better person to ask about this.
Ed