COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@tigreyes2004

I went & had my J&J vaccine today. So far I feel ok & no sore arm.
I have just been resting today & drinking plenty of liquids.
Your not suppose to take Tylenol before your vaccine.
I have heard that I might have side effects tomorrow so I will see.
I will keep you all posted.
Stay safe & God Bless.
Genie
.

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So glad for you.

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I have had my 1st shot and two weeks later my arm is still sore and aches. The pain radiates into my shoulder and neck. Anyone else have this problem? I also still have a huge bruise two weeks after. I was sick in bed for 2 days after.

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@tigreyes2004

I went & had my J&J vaccine today. So far I feel ok & no sore arm.
I have just been resting today & drinking plenty of liquids.
Your not suppose to take Tylenol before your vaccine.
I have heard that I might have side effects tomorrow so I will see.
I will keep you all posted.
Stay safe & God Bless.
Genie
.

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Hi, Genie-I'm not doing as well as you. I have a fever of 100.3 and everything that comes with it. Arms can hurt for a while, @suzanne2. Mine did after my first one.

Although I feel awful today I would do this, again and again, to help stop the spread of this disease. No one can tell what kind of effects you will have and more information will not give that to you.

When any of you say that you are waiting for more information, what do you mean? What information? Did you have the flu shot when it was available? I am just lost with this response and would love to understand it.

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I just took a look into the numbers, to see if there are answers to any of the questions being asked, and here is what I found. From the CDC on April 6, 2021: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html

"Reports of death after COVID-19 vaccination
To date, Vaccine Adverse Event Reporting System (VAERS) has not detected patterns in cause of death that would indicate a safety problem with COVID-19 vaccines.

- FDA requires vaccination providers to report any death after COVID-19 vaccination to VAERS.
- Reports of death to VAERS following vaccination do not necessarily mean the vaccine caused the death.
- CDC follows up on any report of death to request additional information and learn more about what occurred and to determine whether the death was a result of the vaccine or unrelated.
- CDC, FDA, and other federal partners will continue to monitor the safety of COVID-19 vaccines.

Over 167 million doses of COVID-19 vaccines were administered in the United States from December 14, 2020, through April 5, 2021. During this time, VAERS received 2,794 reports of death (0.00167%) among people who received a COVID-19 vaccine. CDC and FDA physicians review each case report of death as soon as notified and CDC requests medical records to further assess reports. A review of available clinical information including death certificates, autopsy, and medical records revealed no evidence that vaccination contributed to patient deaths. CDC and FDA will continue to investigate reports of adverse events, including deaths, reported to VAERS."

Then I looked a little deeper.
- During the same 110 day period in the US, roughly 855,000 people died, out of a population of 331,000,000 (about 7775 per day die in the US) . That is a death rate of .0258% overall (25 in 100,000.)
- Even if you said 2794 people died out of 83.5 million - assuming 2 injections per person - that is still a POSSIBLY vaccine-related death rate of .0033% (3.3 in 100,000) - about 1/8th the chance of dying of any cause during the same time.
- Based on current statistics, if you contract Covid, your chance of dying is 1.8% (1800 in 100,000) - at least 500 times higher than your chance of dying from the vaccine. And if you have underlying conditions or comorbidities, that risk is even higher.
- The chance of getting Covid this past year has been 1 in 11 - chances among vaccinated people so far has been less than 1 in 1000.

This is my last contribution to this topic. If these numbers, and the reduced incidence of illness and deaths in congregate living facilities and among health care workers after vaccination cannot convince you of the advisability of getting vaccinated, nothing will.

All I ask is that you not use your personal fears to discourage others from getting vaccinated.
Sue

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@sueinmn

I just took a look into the numbers, to see if there are answers to any of the questions being asked, and here is what I found. From the CDC on April 6, 2021: https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html

"Reports of death after COVID-19 vaccination
To date, Vaccine Adverse Event Reporting System (VAERS) has not detected patterns in cause of death that would indicate a safety problem with COVID-19 vaccines.

- FDA requires vaccination providers to report any death after COVID-19 vaccination to VAERS.
- Reports of death to VAERS following vaccination do not necessarily mean the vaccine caused the death.
- CDC follows up on any report of death to request additional information and learn more about what occurred and to determine whether the death was a result of the vaccine or unrelated.
- CDC, FDA, and other federal partners will continue to monitor the safety of COVID-19 vaccines.

Over 167 million doses of COVID-19 vaccines were administered in the United States from December 14, 2020, through April 5, 2021. During this time, VAERS received 2,794 reports of death (0.00167%) among people who received a COVID-19 vaccine. CDC and FDA physicians review each case report of death as soon as notified and CDC requests medical records to further assess reports. A review of available clinical information including death certificates, autopsy, and medical records revealed no evidence that vaccination contributed to patient deaths. CDC and FDA will continue to investigate reports of adverse events, including deaths, reported to VAERS."

Then I looked a little deeper.
- During the same 110 day period in the US, roughly 855,000 people died, out of a population of 331,000,000 (about 7775 per day die in the US) . That is a death rate of .0258% overall (25 in 100,000.)
- Even if you said 2794 people died out of 83.5 million - assuming 2 injections per person - that is still a POSSIBLY vaccine-related death rate of .0033% (3.3 in 100,000) - about 1/8th the chance of dying of any cause during the same time.
- Based on current statistics, if you contract Covid, your chance of dying is 1.8% (1800 in 100,000) - at least 500 times higher than your chance of dying from the vaccine. And if you have underlying conditions or comorbidities, that risk is even higher.
- The chance of getting Covid this past year has been 1 in 11 - chances among vaccinated people so far has been less than 1 in 1000.

This is my last contribution to this topic. If these numbers, and the reduced incidence of illness and deaths in congregate living facilities and among health care workers after vaccination cannot convince you of the advisability of getting vaccinated, nothing will.

All I ask is that you not use your personal fears to discourage others from getting vaccinated.
Sue

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Thank you @sueinmn for that deep dive analysis of current statistics. I think it can be easy to look at a number and assume lack of safety. When the numbers are given more relevance and context, like you have demonstrated above, it certainly is compelling when wanting to base a decision on the facts available.

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@merpreb

Hi, Genie-I'm not doing as well as you. I have a fever of 100.3 and everything that comes with it. Arms can hurt for a while, @suzanne2. Mine did after my first one.

Although I feel awful today I would do this, again and again, to help stop the spread of this disease. No one can tell what kind of effects you will have and more information will not give that to you.

When any of you say that you are waiting for more information, what do you mean? What information? Did you have the flu shot when it was available? I am just lost with this response and would love to understand it.

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I'm sorry to hear you have a fever. I will see how today goes for me. My legs I do notice are more tingly than usual but until I start moving around, then my Neuropathy pain gets a little better.
Drink plenty of liquids bc that is what I did yesterday & I just rested.
I hope you feel better & keep us post.
God bless
Genie

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Hi all,
I’ve been following this discussion and people’s posts about neuropathy (and other conditions), COVID infection risk and whether to get vaccinated. I understand and respect all sides of the debate. People are understandably concerned about the possibility that a vaccine or COVID-19 infection could exacerbate or worsen existing health issues or cause new ones.

To help inform this discussion, I reached out to physician experts at Mayo Clinic: Dr. Ravindra Ganesh, who leads the COVID Frontline Care Team (CFCT) efforts, as well as the Post-COVID Clinic, at Mayo Clinic and Dr. Greg Vanichkachorn, who leads the Mayo Clinic COVID Activity Rehabilitation Program (CARP). They are also two of the authors of the Post-COVID Recovery blog on Mayo Clinic Connect.

Drs Ganesh and Vanichkachorn (Dr. Van):
“The risk versus benefit analysis is unique to each patient. There are risks from this new vaccine. It is a brand-new method of vaccination. There are also risks of not getting the vaccine, mainly getting COVID-19 or getting it a second time. The risks of COVID infection include death or Post COVID Syndrome.

CY: Can the COVID vaccine trigger or worsen neuropathy in patients who already have neuropathy?
GV: No, not that I have heard of.
RG: It is possible for the immune response to anything including a vaccine to worsen symptoms mediated by an autoimmune condition. There is no clear connection for other kinds of neuropathy e.g., diabetic.

CY: Is there evidence that suggests people with neuropathy should wait to get the vaccine if the risk to COVID-19 exposure is low?
GV: No.
RG: No, I would recommend that people get vaccinated to minimize their risk of COVID-19 regardless of their exposure risk.

CY: Can getting COVID infection cause neuropathy or worsen existing neuropathy?
GV: Yes. We have seen both.
RG: Yes, probably to a greater extent than the vaccine.

CY: What are the pros and cons of getting the COVID vaccine for people with neuropathy?
GV: Some patients with neuropathy due to COVID infection report full recovery after getting the vaccine. Cons is some people get soreness, fever, and fatigue for a few days after each dose.
RG: Some people experience benefit in terms of symptoms, some report worsening symptoms, most will not experience a difference.

CY: Have people died as a result of getting the vaccine?
GV: No, not that I have heard of from the vaccine solely. There are usually other medical issues at play.
RG: Not to our current knowledge. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html

Dr Van, shared: “In my opinion, the risks of the vaccine are less than the risk of getting COVID-19. In the end, I would vaccinate my parents, my wife, my kids, rather than get COVID-19.”

Our goal is to provide the latest information from Mayo Clinic experts - information that is accurate at the time of its posting. Due to the fluid nature of the COVID-19 pandemic, scientific understanding, along with guidelines and recommendations, may change. For this reason, I thank all members for maintaining understanding and respect as people analyze the data and make decisions right for them given their often-complex health concerns.

Stay up-to-date with the latest COVID information from Mayo experts:
- Dr. Gregory Poland in his weekly COVID Q&A video https://connect.mayoclinic.org/blog/podcasts/
- Dr. Ganesh and Dr. Van in the Post-COVID Recovery blog: https://connect.mayoclinic.org/blog/post-covid-recovery/

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@colleenyoung

Hi all,
I’ve been following this discussion and people’s posts about neuropathy (and other conditions), COVID infection risk and whether to get vaccinated. I understand and respect all sides of the debate. People are understandably concerned about the possibility that a vaccine or COVID-19 infection could exacerbate or worsen existing health issues or cause new ones.

To help inform this discussion, I reached out to physician experts at Mayo Clinic: Dr. Ravindra Ganesh, who leads the COVID Frontline Care Team (CFCT) efforts, as well as the Post-COVID Clinic, at Mayo Clinic and Dr. Greg Vanichkachorn, who leads the Mayo Clinic COVID Activity Rehabilitation Program (CARP). They are also two of the authors of the Post-COVID Recovery blog on Mayo Clinic Connect.

Drs Ganesh and Vanichkachorn (Dr. Van):
“The risk versus benefit analysis is unique to each patient. There are risks from this new vaccine. It is a brand-new method of vaccination. There are also risks of not getting the vaccine, mainly getting COVID-19 or getting it a second time. The risks of COVID infection include death or Post COVID Syndrome.

CY: Can the COVID vaccine trigger or worsen neuropathy in patients who already have neuropathy?
GV: No, not that I have heard of.
RG: It is possible for the immune response to anything including a vaccine to worsen symptoms mediated by an autoimmune condition. There is no clear connection for other kinds of neuropathy e.g., diabetic.

CY: Is there evidence that suggests people with neuropathy should wait to get the vaccine if the risk to COVID-19 exposure is low?
GV: No.
RG: No, I would recommend that people get vaccinated to minimize their risk of COVID-19 regardless of their exposure risk.

CY: Can getting COVID infection cause neuropathy or worsen existing neuropathy?
GV: Yes. We have seen both.
RG: Yes, probably to a greater extent than the vaccine.

CY: What are the pros and cons of getting the COVID vaccine for people with neuropathy?
GV: Some patients with neuropathy due to COVID infection report full recovery after getting the vaccine. Cons is some people get soreness, fever, and fatigue for a few days after each dose.
RG: Some people experience benefit in terms of symptoms, some report worsening symptoms, most will not experience a difference.

CY: Have people died as a result of getting the vaccine?
GV: No, not that I have heard of from the vaccine solely. There are usually other medical issues at play.
RG: Not to our current knowledge. https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/adverse-events.html

Dr Van, shared: “In my opinion, the risks of the vaccine are less than the risk of getting COVID-19. In the end, I would vaccinate my parents, my wife, my kids, rather than get COVID-19.”

Our goal is to provide the latest information from Mayo Clinic experts - information that is accurate at the time of its posting. Due to the fluid nature of the COVID-19 pandemic, scientific understanding, along with guidelines and recommendations, may change. For this reason, I thank all members for maintaining understanding and respect as people analyze the data and make decisions right for them given their often-complex health concerns.

Stay up-to-date with the latest COVID information from Mayo experts:
- Dr. Gregory Poland in his weekly COVID Q&A video https://connect.mayoclinic.org/blog/podcasts/
- Dr. Ganesh and Dr. Van in the Post-COVID Recovery blog: https://connect.mayoclinic.org/blog/post-covid-recovery/

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Thank you so much for this information. I have pretty serious neuropathy & a blood disease but my oncologist gave me the go-ahead for the vaccine back in January. I’m so glad he did & I have had no side effects. Just thought you would all like to know.

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@lulu85

I've been dealing with my neuropathy for many years and was finally in a pretty good place...until the vaccine. I'm sleeping a lot since my 2nd shot because I just can't handle the pain or fight my exhaustion. I believe the vaccine is messing with more than my neuropathy now. Hopefully my doctor will be able to shed some light on all this and hopefully nothing will be permanent

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Best wishes with your doctor. I hope they can offer positive advice. Please let us know how it goes.

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@avmcbellar

Hi @athenalee I am sorry to hear your neuropathy symptoms have increased. Seems many people experience different symptoms with the vaccine(s). All I know is I am trying to avoid an exacerbation of my neuropathy symptoms by waiting for more information as it becomes available. Since this vaccine was approved as an emergency medication I am being cautious. Whatever antibodies(good or bad) it creates in our bodies we are stuck with them. There is no reversal and no legal action a person can take. I do not want to take a chance on worsening neuropathy when my risks are low for contracting the virus. I understand the vaccine provides protection from severe symptoms. Funny, I always thought that a vaccine gives you immunity to a disease. Clearly that is not the case for the covid-19 virus. We can see on Mayo Clinic Connect many members are desperately trying to find ways to decrease their neuropathy pain. I am sorry to hear they found the reverse. I wish everyone all the best and hope their neuropathy symptoms return to their normal. Toni

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There are different definitions of immunity in the medical field. I believed “immunity” to a disease would mean you cannot become ill from that disease. Apparently there are different levels of immunity. With the covid-19 virus I was thinking of “sterile immunity” where a person cannot become ill. What is reachable with the covid-19 virus is “functional immunity”. As an article from Advisory Board describes it....While people who develop this type of immunity could become reinfected with the pathogen at a later date, they would experience a milder, shorter infection.
"It may be possible to become infected again, without any change in the virus," said Christian Drosten, director of the Institute of Virology at Berlin’s Charité University Hospital. But "[t]he resulting infection will be mild or asymptomatic, with significantly lower levels of virus replication and onward transmission."

I believe each person has to weigh their exposure risk to their potential health symptoms after receiving the vaccine(s). If a person wants to be in crowds then perhaps that person will want some protection from the virus and to risk increased symptoms from the vaccine(s) like the increased neuropathy pain. It is a personal choice. Unfortunately it is not a one time shot of the vaccine to keep that protection. Also, new vaccines may need to be developed for any new strains in order to gain that protection. The mRNA is all new technology never been used before. The long term effects of the vaccines at this point remain unknown.

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