Life with Parkinson’s After the COVID-19 Vaccine

As the Pfizer/BioNTech, Moderna and Johnson & Johnson COVID-19 vaccines become more widely available across the United States, and data shows vaccine safety and benefit in those with Parkinson’s disease (PD), people are looking to brighter days ahead. This Facebook Live was conducted prior to U.S. Centers for Disease Control Announcement (CDC) that they will be pausing Johnson & Johnson vaccines out of an abundance of caution while investigating reports of rare and potentially dangerous blood clots. Dr. Anthony Fauci from NIH has stated that people who have already received the Johnson & Johnson vaccine will still receive the COVID-19 benefits. Continued monitoring for potential blood clots should be performed with your local doctor.

In an April 8 Parkinson’s Foundation Facebook Live event, “Life with Parkinson’s After the Covid-19 Vaccine,” Parkinson’s Foundation National Medical Advisor Michael S. Okun, MD, answered questions from the PD community about what post-vaccine life might look like.

“We have seen a categorical worsening of Parkinson’s symptoms during the COVID-19 pandemic and that's because people have been stuck at home without the ability to seek care,” Dr. Okun said. “Vaccines are one of the things that are going to help.”

Question: How do we know what long-term effects will be from COVID-19 vaccines?

Dr. Okun: This is one of the safest vaccines that we’ve seen. We have data on tens of thousands of people who have received the available immunizations and how they fared. The safety record has been outstanding. Nonetheless, health authorities continue to track side effects from the vaccines to ensure their ongoing safety. For example, on April 13, the FDA and CDC determined that administrations of the Johnson & Johnson version of the vaccine should be paused so researchers can investigate a possible link between it and blood clots. It should be noted that Johnson & Johnson uses a different type of platform for their vaccine than Moderna and Pfizer. The Moderna and Pfizer vaccines are not affected by the CDC and FDA’s announcement and have not been associated with blood clots.

The most common side effects of the COVID-19 vaccines are short-term, and include:

  • Headache
  • Fever
  • Chills
  • Nausea
  • Muscle, joint or injection site pain
  • Injection site swelling or redness

When these symptoms appear after a shot, they are in general all good things – it means your immune system is working. Long-term side-affects are rare from the vaccine. You have a much greater chance of having a long-term problem from COVID infection than from receiving the vaccine. In fact, although we don’t yet know why, some people living with “long-hauler,” persistent COVID symptoms – lasting fatigue, headaches and other symptoms – are improving after they receive the COVID-19 vaccine.

Question: Can the COVID-19 vaccine cause multiple sclerosis (MS) or amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease)?

Dr. Okun: The COVID-19 vaccine does not cause multiple sclerosis or Lou Gehrig’s disease.

Question: My dad died two weeks after he got the COVID-19 vaccine. He's had Parkinson's since 2009. Is there a correlation?

Dr. Okun: Our hearts go out to you and to everyone who has lost someone during these times. When we see possible associations to a vaccine, we look carefully at the data. We have not seen a statistical correlation that the vaccine causes death, and we're looking at very large numbers.  

During the 1950’s polio epidemic, we had to pause the polio vaccine rollout to look for  contaminants because we saw deaths associated with the shot. The problem was with a Cutter Laboratories vaccine that inadvertently contained live polio virus. This created a large-scale change in the way the Food and Drug Administration, and the world, treats vaccine development.

Today, the newest vaccines are designed to send the instructions to your immune system to fight COVID-19. The vaccine teaches your immune system what COVID-19 looks like and how to attack, it if you are infected. We now perform full-scale safety monitoring. If we see a concerning safety pattern, like they saw in 1955 with the polio vaccine, then we pause the program and investigate. Right now, we have paused the Johnson & Johnson vaccine to examine a potential association with blood clots.

Question: Will the vaccine change or worsen my symptoms of Parkinson's?

Dr. Okun: The vaccine won’t change long-term symptoms, but you may experience short-term side effects, such as those mentioned above. These side effects are common. Your body is responding to the vaccine as the instructions in the vaccine teaches your immune system to make antibodies against COVID-19.

We also know that stress, anxiety and sleep deprivation can all worsen PD symptoms, and getting a vaccine can for some, be a source of anxiety.

Question: Is Parkinson’s one of the expected side effects of the COVID-19 vaccine?  

Dr Okun: We don’t expect the COVID-19 vaccine to cause or to worsen Parkinson's disease.

When we administer a vaccine for any disease, we focus heavily on documentation – what we call case report forms. Every time we give a vaccine, if somebody reports something, we write it down on one of these case report forms. Regulatory authorities monitor these reports. We've also enrolled a lot of people in long-term studies to monitor how the vaccine will affect people over time.

PD is not an expected vaccine side effect, but if it did happen – if somebody sort of popped up with Parkinson's – then we would want to know about that emerging issue- and we would definitely document it.

It's amazing to think about the large number of people that have been vaccinated so far in this program without major statistical problems – it's breathtaking in terms of the number of lives that have been saved.

Question: Which vaccine is safest for people with Parkinson disease?

Dr. Okun: Moderna and Pfizer vaccines have a very similar safety record, and researchers are investigating a possible link between the Johnson & Johnson vaccine and blood clots that have been reported in six women between the ages of 18 and 48. The Pfizer and Moderna vaccines require two shots, while the Johnson & Johnson vaccine only requires one. In general, we seem to get more effectiveness against COVID-19 using a two-shot approach – but all three are effective in preventing the long-term side effects of COVID-19 and preventing hospitalizations as well as death. The Johnson & Johnson vaccine program is currently paused so researchers can investigate a possible link between it and blood clots.

Question: When should I get the vaccine if I tested positive for COVID-19?

Dr. Okun: We don't have the exact answer to that question, but we're starting to get some clarity. If you had COVID-19 you should still be vaccinated. The Centers for Disease Control (CDC) is looking at this question.  We don’t know how long it’s safe to not be vaccinated after you’ve recovered from COVID-19 or how long does the protection last. We are assessing whether an unvaccinated previously affected person can be with someone who's vaccinated and for how long they may get protection from having had the actual COVID-19 virus.

We have seen people with COVID-19 infection who do not have antibodies a few months down the road.  The CDC is examining this issue but in general we recommend that people with Parkinson’s who had COVID-19 get vaccinated 6-8 weeks after the infection.  This may change with more guidance from the CDC.

Things are evolving quickly in the field and we want to make sure that we get you as much information as we can in-real time, so be sure to frequently check Parkinson.org/COVID19 for updates on the COVID-19 vaccination.

Question: The Parkinson’s Foundation recently posted a COVID-19 study from the Netherlands stating the (Pfizer/BioNTech and Moderna) vaccines were observed to be safe for older adults, but caution was needed for the specific subgroup of very frail and terminally ill elderly people with PD living in long-term care facilities; or for people with PD who have additional chronic illnesses. Can you expand on this?

Dr. Okun: The highest COVID-19 mortality rates are among the elderly, so many countries – including the United States, Europe and the Netherlands – have prioritized vaccinations in people over 65. Many of the elderly population reside in nursing homes. The vaccine makes a lot of sense for most cases of elderly people and for people at nursing homes.

The Dutch study is specifically referring to handful of rare exceptions – extremely frail or terminally ill people, or those who don’t want their lives prolonged. There are also a group of people who cannot consent due to memory loss and dementia.

It’s important to talk to your doctor. It’s also important to have the conversation: “What do you think this person would want us to do if they had capacity to consent?” If the goal is prolonging life and preventing COVID-19, the vaccination might be the answer. For people who are terminally ill, very frail and at the end of life, you could make an argument that you should talk about it before administering a vaccine that could prolong their life.

Question: How can a vaccine for COVID be developed so quickly and why can't the same dedication and resource allocation happen for Parkinson’s disease?

Dr. Okun: I wrote an op-ed for The Daily Beast a couple of months ago on exactly this question. We’re calling for an “Operation Warp Speed” for Parkinson’s disease – just like the national program that drove the rapid COVID-19 vaccine development. The National Institutes of Health (NIH), the world’s largest funder of medical research, sequenced the genetic information for COVID-19 shortly after the first case was documented in December 2019. The institution then shared the information with pharmaceutical and biotechnology companies like Moderna to quickly develop vaccines.

Not only did the industry make some of the more old-fashioned vaccines (like the flu vaccine) to protect against COVID-19, but a lot of our medical researchers were also previously working on a technology called messenger RNA (or mRNA) vaccines (intended to create and deliver specific immune system defense instructions). They were able to use this technology to create successful COVID-19 vaccines, thanks largely to prior research on viruses supported by NIH and other funders across the globe.

Question: Why are the Pfizer and Moderna vaccines two shots but the Johnson & Johnson shot is just one?

Dr. Okun: The Moderna and the Pfizer vaccines – with an overall efficacy of 94% and 95% – were designed as two-shot vaccines and they were tested in clinical trials as a two shot approach; they are messenger RNA (or mRNA) vaccines, which use single-stranded RNA technology to create a COVID-19 defense. The Johnson & Johnson vaccine has a 66% efficacy (but the same effectiveness at preventing hospitalization and mortality as the other two vaccines) and uses DNA technology to deliver the instructions to fight COVID-19. It was designed as a single shot.

We don't know whether two shots of the Johnson & Johnson would increase its efficacy up to where the Moderna and the Pfizer vaccines are, but all three – including the single-shot vaccine – are keeping people out of the hospital.

Question: How long will the vaccine protect me?

Dr Okun: As more data comes for each of the vaccines, we will be able to answer this question individually as it may differ. The hope is that you'll get at least a year of protection. The data on people who are in vaccine trials will tell us more about the length of protection.

Examining the length of protection of the vaccine is tricky because viruses like COVID-19 mutate to survive. The B.1.1.7 coronavirus variant – first identified in the U.K. – is the dominant strain of COVID in the U.S. today, different from the dominant strain that was here in March. We might need to administer the COVID-19 vaccine annually based on what we think the dominant strain will be, much like we do with the flu vaccine. We will need a strategy and it will likely include yearly vaccines for years to come.

Question: My family refuses to get the vaccine. What is the best argument I can use to try to convince them to get it?

Dr Okun: We can convince more people to consider the vaccine by starting out on the right foot. We have to respect each other’s points of view.

It's OK for people to be scared – it's OK to question whether the safety record is there. You should be doing that. We now know that people who are vaccinated very rarely die of COVID-19-related complications – statistically close to zero. I think that's a powerful fact.

Almost everybody wants the information. If you can share the information with them and have a positive dialogue and respect their points of view, I think more people will come around to the vaccine, particularly as the safety record continues to evolve. Sharing with people that you respect their decision and that you are grateful to have a dialogue will take us farther in overcoming vaccine hesitancy than shouting and fighting.

Question: How worried should we be about virus variants? Does that level of worry change if we’ve been vaccinated?

Dr Okun: Mutations are very common in coronaviruses. Sometimes the mutations are easier to treat and sometimes they're harder to treat. The vaccine is still active, but the longer we give the virus to continue to mutate the worse chance we have of beating this thing. This is why it’s important for us to get our vaccines, put our masks on and distance. If we don't do these things and we let this virus crawl back in, and keep mutating, eventually it could beat the vaccinations. That's why it's so important for us to continue masking even though we are vaccinating.

Question: If I’ve been vaccinated but my daughter and her family haven’t been, can I still see them safely? Would I need to wear a mask? Can I hug my grandkids?

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Dr. Okun: If you are fully vaccinated, current CDC guidelines say yes, you can gather indoors – without masks or staying 6 feet away – with vaccinated (and in some cases unvaccinated) people from one other household. It’s important to be sure none of them is at risk for severe illness from COVID-19. They can still give you COVID, although you may end up being asymptomatic, because you’re vaccinated. We still don't know if you could carry it back to them, but it's a theoretical possibility. It’s probably safest to wear a mask, but certainly some quick, masked hugs are OK. Social contact is really important, but maintaining small social groups, socially distancing and keeping your mask on are all critically important too.

Learn More

The Parkinson’s Foundation is committed to keeping you up to date on the latest COVID-19 and PD developments at Parkinson.org/COVID.

Call our free Helpline 1-800-4PD-INFO (1-800-473-4636) for answers to your Parkinson’s questions.

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