In January, the Multiple Sclerosis Coalition issued guidance, echoed by the National Multiple Sclerosis Society, recommending that everyone with MS receive the Pfizer-BioNTech or Moderna COVID-19 vaccine as early as possible. MyMSTeam members still have many questions about COVID-19 vaccines.
MyMSTeam invited Dr. Barry Singer to help us address these questions. Dr. Singer is the director and founder of The MS Center for Innovations in Care at Missouri Baptist Medical Center in St. Louis. His award-winning MS website, MS Living Well, launched in 2007 and has been a valuable resource in more than 190 countries. He is also the host of the MS Living Well Podcast, available on Apple Podcasts and Spotify. Dr. Singer discussed COVID vaccines and MS in a recent podcast episode and blog post.
That's correct. The Pfizer vaccine has been studied in over 42,000 people in clinical trials, but we don't have specific data for people with MS.
Fortunately, we do have some experience now. We've had these mRNA vaccines since mid-December. I've had MS patients get vaccinated, and at this point we have not seen any reactions. I'm unaware of any of my colleagues that have had issues in their patients. A lot of people worry about long-term effects, but experts have said that after 60 days, there are very rarely complications from a vaccine. If you're going to see a problem, that usually happens within the first two months.
At this point, things are looking very safe. And we can't underestimate COVID-19 and its long-term complications. Whatever protection you can get is important.
The concern with any vaccination is whether your immune system is compromised, and with MS, your immune system is overactive. Vaccines are only a concern if you’re on certain medications and the vaccine is made with a live attenuated virus. The mRNA COVID vaccines [from Pfizer-BioNTech and Moderna] are not live.
These mRNA vaccines cannot replicate, they cannot divide, in your body. When you inject it under your skin it's just a simple RNA coding strand that creates only the spike protein that is found on the surface of the coronavirus. The spike protein will be presented on your muscle cells, and then your T cells and B cells can create a targeted response. If you ever get exposed to that virus again, you're going to have a dramatic immune response against the spikes on the surface of the real virus, and your immune system can fend off that virus.
Then that mRNA gets broken down after a little while. It's only on a muscle cell, and it's going to get degraded. But you'll continue to have immune memory as protection.
No vaccine has been demonstrated to trigger MS relapses to date. In rare cases, an immune attack on the peripheral nervous system after a vaccination can cause an immune attack on peripheral nerves called Guillain-Barré.
There may be concern about receiving the COVID-19 vaccine if you’re treating an active relapse with intravenous steroids such as Solu-Medrol (Methylprednisolone). IV steroids may prevent your immune system from mounting a good response to the vaccine. For my patients who have received intravenous steroids, I’ve been having them wait a week, or ideally two weeks, after a steroid infusion before they get the vaccine.
The biggest concern with people with MS [on DMTs] is how well the vaccine will work. We find that with the flu vaccine, the pneumococcal vaccine, and even novel vaccines such as rabies, people on most MS medications make good responses to vaccines.
But it's important to keep in mind that vaccines may not work quite as well in a group of people on certain medications. For example, response rates to flu vaccines were lower for people on Ocrevus (Ocrelizumab), a B-cell depleting treatment, or Gilenya (Fingolimod), an S1P medication [which affects B cell movement]. You may not mount quite as robust a response to a vaccine. Instead of a 95 percent chance that you are protected, your chance of protection may be somewhat lower. There’s good flu vaccine response data for interferons [Avonex, Betaseron, Extavia, Plegridy, and Rebif], Copaxone (Glatiramer acetate), and Aubagio (Teriflunomide).
The important takeaway is not to avoid the vaccine, because you want to be protected as much as you can. Getting the vaccine is better than not being protected. Just realize there may be a chance that on some of these MS medications, you may not be 100 percent immune. You still have to be careful for now, wearing a mask and practicing social distancing. You can't just rip off the mask and go partying.
It's important to talk to your doctor about timing with MS medications that are given intermittently, for example Mavenclad (Cladribine) and Lemtrada (Alemtuzumab). Your doctor may want you to wait for your immune system to bounce back, and then get the COVID vaccine before you get your next dose. Try to make a game plan to coordinate with your health care provider team and your neurologist so you can figure out the best strategy to protect yourself.
If the timing works out, vaccination prior to your next Ocrevus infusion may be beneficial. Vaccinating before starting certain MS medications that suppress the immune system may help with COVID-19 immunity.
The second dose is definitely important. That's how it was studied in clinical trials.
After the second dose, when your immune system is exposed to that protein again, you're going to be much more protected and have a very effective response if you're exposed to the SARS-CoV-2 virus.
It may seem like the vaccine was rushed, but people have been working on the technology for mRNA vaccines for about 17 years. I think the safety concerns are important with a new vaccine, but the results so far have been reassuring.
We read the science. We look at the data. I haven't seen any resistance from my colleagues, including MS doctors around the world, about getting vaccinated themselves.
People have asked me if I had any reactions to the vaccine, and I said, “Yes, I started having abnormal movements after the second one, and that's because I was doing a happy dance!”
It’s important to keep everything in perspective. COVID-19 can be a brutal, fatal disease that leaves many with long-term consequences.
If you have had an anaphylaxis reaction or a very serious allergic reaction to vaccines in the past, then you definitely need to sit down and talk with your doctors about whether the COVID vaccine is right for you. If you felt a little achy or you had mild fever after the flu vaccine, I don't think that would be a reason not to take the COVID-19 vaccine.
Not really. I think if you have an opportunity for access, you should take advantage of it. Delaying vaccinations will delay things getting back to normal. If you want to get out and start living your life, it's going to be very hard if you're not vaccinated.
It's been a very hard year. Many of my MS patients want to exercise, go to water therapy and yoga class, see their grandchildren, and interact with friends. There's been a lot of sacrifice. Unless you want to do that for another year, it's important to protect yourself as much as you can, early on. There's only so much time that we all have on this planet, so we want to maximize our quality of life.
I've had people that are just not ready for the vaccine, and that's fine. We have that conversation. Everyone needs to make a decision that's comfortable, but the more information that they have, the better that they can make that decision. It's the individual’s decision, but don't underestimate COVID-19. That's my recommendation.
The main thing is that we're making progress on this awful disease, and the only way we're going to eliminate this virus is by getting vaccinated. We want to try to crush this virus before it keeps mutating and spreading. I recommend you get vaccinated and also reach out to other people living with MS and their families about getting vaccinated too.
I want you to be able to do everything you want to do as you age, but there's a risk here in the middle of a pandemic. We want people to get vaccinated to protect everybody out there wanting to live a positive life with MS.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 162,000 members come together to ask questions, give advice, and share their stories with others who understand life with multiple sclerosis.
Are you living with multiple sclerosis? Have you had the COVID-19 vaccine? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Get updates directly to your inbox.
Become a member to get even more:
A MyMSTeam Member
I had no intention of taking the vaccine but I was persuaded to take it.
I have secondary progressive ms, fibromyalgia and arthritis
Hours after the vaccine was administered I was really ill.
I was… read more
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.