1. < Neuropathy

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?

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 18, 2021
In reply to @jonathanc "Thanks for this. The first large study I've seen that relates covid to nerve damage. If..." + (show)
@jonathanc

Thanks for this. The first large study I've seen that relates covid to nerve damage. If that's how some immune systems react to covid I assume they might react the same way to the mRNA vaccines?

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My best guess would be that you are correct. The unknown in this scenario is whether, if a susceptible individual chose not to be vaccinated and got Covid, would they then get neuropathy or have neuropathy get worse?

In my case, I know that I am susceptible to inflammatory flares from vaccines. However I also have compromised lungs, and high risk of serious illness from Covid, influenza and pneumonia. Therefore I choose to take the vaccines and accept those consequences, rather than risk serious illness from the viruses.

I also wanted my life back, and knew I could not go out unvaccinated into the world, or spend time with my too-young-for-vaccine grands.

You decision may differ. And, as with everything Covid, stay tuned - we are still learning.
Sue

REPLY
1 reply
marye2 | @marye2 | Jun 18, 2021
In reply to @sueinmn "To all of you suffering from distressing symptoms after your vaccine, I would like to offer..." + (show)
@sueinmn

To all of you suffering from distressing symptoms after your vaccine, I would like to offer another bit of emerging research. This has not yet been peer reviewed, but it is quite interesting. From the New York Times http://e.startribune.com/Olive/ODN/StarTribune/shared/ShowArticle.aspx?doc=MST%2F2021%2F06%2F17&entity=Ar00104&sk=A65A6C20&mode=text

In short, the article from the New York Times reports that over 20% of people who had Covid, whether severe, moderate, mild, or even asymptomatic, suffered adverse health effects afterward. Sometimes even months later. Among the most reported are nerve and muscle pain, including in people who never had such problems in the past. Nine months after a severe, non-hospitalized case of Covid, my 41 year old daughter was diagnosed with severe rheumatoid arthritis, even though she never had ANY symptoms pre-Covid. Her partner at work was diagnosed 9 months after infection with asthma for the first time.

So, it is possible that some of the people reporting reactions after vaccine, especially those who had Covid, may have had these symptoms without the injection.

Also, I would like to see an evaluation of the percentage of the population reporting lingering or severe effects after Covid vs after vaccine. I know the number of event reports is far below 20% of the number of doses given. Last time I checked (in May) it was below 2%.

Just another piece in the puzzle that is Covid.
Sue

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I had a period of inflammation after the vaccine, but all is well. Other people, with same autoimmune as I have, had similar effects. I do not believe that the RA was new to her; just that it was expressed by added inflammation enough so that she could be diagnosed.https://www.rheumatologyadvisor.com/home/general-rheumatology/covid19-vaccination-vaccines-autoimmune-diseases-perspectives-concerns-expectations/

REPLY
Leonard | @jakedduck1 | Jun 19, 2021
In reply to @julkun "I am up to 1800mg of Gabapentin (600 3X per day). It doesn't really help for..." + (show)
@julkun

I am up to 1800mg of Gabapentin (600 3X per day). It doesn't really help for the pain. My doctor says I could take even more. Why bother?

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julkun
My brother is one example where more is helpful. He and I started low and we both went up to the maximum dose of 3,600mg. My brother had quite substantial relief whereas I had none for my neuropathy and it didn’t help my seizures either so who knows how it will react for you. I knew of a man who was taking 7000 mg however now I don’t remember whether it benefited him or not. I was once told by a Physician that you can increase Neurontin/gabapentin as long as side effects permit.
Jake

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eoglover | @eoglover | Jun 19, 2021

Thank you so much for responding. Gabapentin had adverse effects on digestive tract. Had to stop tasking it.

REPLY
jonathanc | @jonathanc | Jun 24, 2021
In reply to @sueinmn "My best guess would be that you are correct. The unknown in this scenario is whether,..." + (show)
@sueinmn

My best guess would be that you are correct. The unknown in this scenario is whether, if a susceptible individual chose not to be vaccinated and got Covid, would they then get neuropathy or have neuropathy get worse?

In my case, I know that I am susceptible to inflammatory flares from vaccines. However I also have compromised lungs, and high risk of serious illness from Covid, influenza and pneumonia. Therefore I choose to take the vaccines and accept those consequences, rather than risk serious illness from the viruses.

I also wanted my life back, and knew I could not go out unvaccinated into the world, or spend time with my too-young-for-vaccine grands.

You decision may differ. And, as with everything Covid, stay tuned - we are still learning.
Sue

Jump to this post

Thanks Sue This is the only vaccine I have ever had a negative reaction to. I go for a second shot next week with considerable trepidation...

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 25, 2021
In reply to @jonathanc "Thanks Sue This is the only vaccine I have ever had a negative reaction to. I..." + (show)
@jonathanc

Thanks Sue This is the only vaccine I have ever had a negative reaction to. I go for a second shot next week with considerable trepidation...

Jump to this post

I am glad you made the decision to get the next dose. My concern is that you be as fully protected as possible, given the new variants and how severe and infectious they appear to be.
Good luck, and let us know how you do.
Sue

REPLY
fishmore | @fishmore | Jul 1, 2021
In reply to @bustrbrwn22 "@cue. I have the same concerns with my neuropathy and lichen planus. Has anyone heard of..." + (show)
@bustrbrwn22

@cue. I have the same concerns with my neuropathy and lichen planus. Has anyone heard of issues with lichen planus and the vaccine? Was testing these conditions part of obtaining approval for a vaccine?

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No effect to my oral lichen planus

REPLY
fishmore | @fishmore | Jul 1, 2021
In reply to @sueinmn "To all of you suffering from distressing symptoms after your vaccine, I would like to offer..." + (show)
@sueinmn

To all of you suffering from distressing symptoms after your vaccine, I would like to offer another bit of emerging research. This has not yet been peer reviewed, but it is quite interesting. From the New York Times http://e.startribune.com/Olive/ODN/StarTribune/shared/ShowArticle.aspx?doc=MST%2F2021%2F06%2F17&entity=Ar00104&sk=A65A6C20&mode=text

In short, the article from the New York Times reports that over 20% of people who had Covid, whether severe, moderate, mild, or even asymptomatic, suffered adverse health effects afterward. Sometimes even months later. Among the most reported are nerve and muscle pain, including in people who never had such problems in the past. Nine months after a severe, non-hospitalized case of Covid, my 41 year old daughter was diagnosed with severe rheumatoid arthritis, even though she never had ANY symptoms pre-Covid. Her partner at work was diagnosed 9 months after infection with asthma for the first time.

So, it is possible that some of the people reporting reactions after vaccine, especially those who had Covid, may have had these symptoms without the injection.

Also, I would like to see an evaluation of the percentage of the population reporting lingering or severe effects after Covid vs after vaccine. I know the number of event reports is far below 20% of the number of doses given. Last time I checked (in May) it was below 2%.

Just another piece in the puzzle that is Covid.
Sue

Jump to this post

I have had the two vaccines and now have a paresthesia on my right side of face identical to a diagnosis of mono neuritis multiplex 25+ yrs ago. I suspect there is a link between the drug and my current MNM problem.

REPLY
1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 1, 2021
In reply to @fishmore "I have had the two vaccines and now have a paresthesia on my right side of..." + (show)
@fishmore

I have had the two vaccines and now have a paresthesia on my right side of face identical to a diagnosis of mono neuritis multiplex 25+ yrs ago. I suspect there is a link between the drug and my current MNM problem.

Jump to this post

@fishmore Welcome to Mayo Clinic Connect. We’re an online community forum where members come together to use our experiences and valuable insights gathered along our life journies to help each other. We’re not medical professionals so we can’t diagnose but we can offer suggestions and help find answers.

How long ago did you receive the Covid vaccination? Also, which type~Pfizer, Moderna or J&J?

Do you remember how long after your vaccinations that you felt your paresthesia returning? Was it after the first shot or after the second? I’m only asking so that the information is available for others who can relate to your situation.

Sharing my story with you, I had a pre-existing neurological diagnosed condition on my spinal cord. After my 1st dose of Pfizer I had an awakening of the symptoms at about the 2 week point. My transplant team at Mayo had me return for a full work up with my transplant doctor and neurologist. Shortening the story, but in essence, my neurologist stated that some people with pre-existing neurological concerns are experiencing some symptoms of their original disease as the immune system gets stimulated. But also that the symptoms in most people disappear within weeks to some months.
My symptoms subsided and completely went away after about 2 weeks I was cleared to have the 2nd shot and was given a prescription for a steroid burst ‘just in case’ i had a flare up. No reaction the second shot so I didn’t have to take the steroids. In my case getting the actual virus would have serious consequences and made the vaccine all the more important to receive.

I hope you have some improvement soon. Did you report this reaction to your physician?

REPLY
1 reply
fishmore | @fishmore | Jul 2, 2021
In reply to @loribmt "@fishmore Welcome to Mayo Clinic Connect. We’re an online community forum where members come together to..." + (show)
@loribmt

@fishmore Welcome to Mayo Clinic Connect. We’re an online community forum where members come together to use our experiences and valuable insights gathered along our life journies to help each other. We’re not medical professionals so we can’t diagnose but we can offer suggestions and help find answers.

How long ago did you receive the Covid vaccination? Also, which type~Pfizer, Moderna or J&J?

Do you remember how long after your vaccinations that you felt your paresthesia returning? Was it after the first shot or after the second? I’m only asking so that the information is available for others who can relate to your situation.

Sharing my story with you, I had a pre-existing neurological diagnosed condition on my spinal cord. After my 1st dose of Pfizer I had an awakening of the symptoms at about the 2 week point. My transplant team at Mayo had me return for a full work up with my transplant doctor and neurologist. Shortening the story, but in essence, my neurologist stated that some people with pre-existing neurological concerns are experiencing some symptoms of their original disease as the immune system gets stimulated. But also that the symptoms in most people disappear within weeks to some months.
My symptoms subsided and completely went away after about 2 weeks I was cleared to have the 2nd shot and was given a prescription for a steroid burst ‘just in case’ i had a flare up. No reaction the second shot so I didn’t have to take the steroids. In my case getting the actual virus would have serious consequences and made the vaccine all the more important to receive.

I hope you have some improvement soon. Did you report this reaction to your physician?

Jump to this post

Thanks for the info. I received my second Pfizer vaccine on 12 Apr and the onset of paresthesia approx 8 weeks after the second vax.

REPLY
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