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Anyone had a problem with neuropathy after receiving the vaccine?

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.

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gmabecky1955 | @gmabecky1955 | Dec 12, 2021

Sorry to hear about many having trouble. I did fine with all 3 shots of the Pfizer vaccine. Only side effect was soreness under arms on first shot. I have SFN with unknown cause.

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nerak8 | @nerak8 | Dec 12, 2021
In reply to @frankie7 "Thank you for this information. Has anyone seen an allergist to get tested for PEG? One..." + (show)
Profile picture for frankie7 @frankie7

Thank you for this information. Has anyone seen an allergist to get tested for PEG? One neurologist suggested this may be in order to see if that did indeed cause the devastating inflammation/reaction many of us got.

Also: has anyone gotten the J&J booster and NOT had a similar bad reaction as they did to the Pfizer or Moderna 2 shots? After months of struggling and going through all the usual neuro tests and biopsies, I was diagnosed with SFN. Now I face the same dilemma many of you have: to get or not to get the booster?

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I got the J&J booster in October and I was fine. No neuropathy flare. My pain increased after the first Pfizer shot and was excruciating after the second shot. That lasted for three months. I couldn’t stand to think of that pain again with the booster so I was so happy when mixing and matching was ok’d.

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milly93 | @milly93 | Dec 12, 2021
In reply to @nerak8 "I got the J&J booster in October and I was fine. No neuropathy flare. My pain..." + (show)
Profile picture for nerak8 @nerak8

I got the J&J booster in October and I was fine. No neuropathy flare. My pain increased after the first Pfizer shot and was excruciating after the second shot. That lasted for three months. I couldn’t stand to think of that pain again with the booster so I was so happy when mixing and matching was ok’d.

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Thanks for your comment! I had the same experience with the Pfizer shot-and the Pfizer booster-several weeks of burning pain. Your comment about the J&J has convinced me to get the J&J instead if another booster is recommended.

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frankie7 | @frankie7 | Dec 12, 2021

Thanks for your reply and letting me know. Appreciate the information. I wish the moderators would have a neurologist weigh in on this forum. I think it's just wrong to have all of our anecdotal experiences just sit here for us to read and then make what we believe are the proper decisions on our care.

With all due respect, moderators--you are patients, not physicians: WE NEED MEDICAL GUIDANCE. Why is the forum not reviewed by a medical professional?

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ninette | @ninette | Dec 13, 2021
In reply to @frankie7 "Thanks for your reply and letting me know. Appreciate the information. I wish the moderators would..." + (show)
Profile picture for frankie7 @frankie7

Thanks for your reply and letting me know. Appreciate the information. I wish the moderators would have a neurologist weigh in on this forum. I think it's just wrong to have all of our anecdotal experiences just sit here for us to read and then make what we believe are the proper decisions on our care.

With all due respect, moderators--you are patients, not physicians: WE NEED MEDICAL GUIDANCE. Why is the forum not reviewed by a medical professional?

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I think because there are too many forums (fora?) to do this.

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twobrooklyn | @twobrooklyn | Dec 13, 2021
In reply to @frankie7 "Thanks for your reply and letting me know. Appreciate the information. I wish the moderators would..." + (show)
Profile picture for frankie7 @frankie7

Thanks for your reply and letting me know. Appreciate the information. I wish the moderators would have a neurologist weigh in on this forum. I think it's just wrong to have all of our anecdotal experiences just sit here for us to read and then make what we believe are the proper decisions on our care.

With all due respect, moderators--you are patients, not physicians: WE NEED MEDICAL GUIDANCE. Why is the forum not reviewed by a medical professional?

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So very true!!

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pacer3702 | @pacer3702 | Dec 13, 2021
In reply to @milly93 "Thanks for your comment! I had the same experience with the Pfizer shot-and the Pfizer booster-several..." + (show)
Profile picture for milly93 @milly93

Thanks for your comment! I had the same experience with the Pfizer shot-and the Pfizer booster-several weeks of burning pain. Your comment about the J&J has convinced me to get the J&J instead if another booster is recommended.

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@milly93 Could you please let us know how you react to the J&J about 14 days after you receive your booster? I had similar but more prolonged severe reactions to the Pfizer vaccines and I'm afraid to get a booster - even afraid of the J&J booster.

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speercntry | @speercntry | Dec 13, 2021
In reply to @kathleen123 "I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2..." + (show)
Profile picture for kathleen123 @kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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I had TN about six years ago and it went away with gabapentin. My first vaccine caused me terrible back pain the next day and lasted a week. I got my second vaccine and was only sick for one day. However my TN has come back with a vengeance and no amount of gabapentin touched it. Had to go on carbamazepine and so far so good. I just hope to get off all medication soon. I won’t be getting the booster!

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raebaby | @raebaby | Dec 14, 2021

I have peripheral neuropathy and am currently getting chemo for breast cancer. I've had the 2 Moderna injections and my booster and never experienced any reactions at all. I'm 80 years old and feeling good.

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silvern12 | @silvern12 | Dec 15, 2021
In reply to @raebaby "I have peripheral neuropathy and am currently getting chemo for breast cancer. I've had the 2..." + (show)
Profile picture for raebaby @raebaby

I have peripheral neuropathy and am currently getting chemo for breast cancer. I've had the 2 Moderna injections and my booster and never experienced any reactions at all. I'm 80 years old and feeling good.

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It’s so good to hear a positive comment I keep postponing the booster Am on for Monday but apprehensive

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