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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@pacer3702

I'm also concerned about the J&J vaccine. It contains polysorbate 80, which is structurally related to the polyethylene glycol (PEG) in the mRNA vaccines. People who are sensitive to PEG may also be sensitive to polysorbate 80.

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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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@lk61

@ninette thank you for posting these links. The woman in this article could be me. 😞

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I also sent them to my neuro surgeon and he thinks they're very interesting due to the deduction and logic. But also because all patients could be treated on time with cortisone. Pity I'm allergic to it. The more doctors know, the more reports will be filed and the sooner we might have a better alternative. For now, for everyone getting the Moderna booster: insist on getting only half a dose- works just as well and maybe the neuropathic flares will be less severe?

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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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@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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@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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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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@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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@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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@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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