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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@frankie7

Thank you for the link. It seems to validate my small fiber neuropathy as a result of the Pfizer vaccine. Is anyone getting advice from their neurologists/physicians about getting a booster? My neurologists say don't get it because I'll have a worse reaction. But I don't want to die of COVID. What advice are others getting from their doctors? Please relay. Thank you.

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My PC doc is not aware of any adverse effects of covid vacs to neuropathy.

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@jeffrapp

I read this entire article. From their comments above, I believe many of the posters did not.
The article does a service by researching other papers which report various neurological adverse reactions to all available vaccines. By a huge margin, the most common reaction was headache, many of which are described as simply tension headaches. The next most common reactions were GBS and VST, lower than headache by a factor of ten. The other reactions listed ranged from a handful to 1 or 2. A large cohort of those reporting adverse reactions were in nursing facilities and/or suffering from serious pre-existing conditions. Of note, since this is a forum about peripheral neuropathy, there were no reported cases of PN, so technically, this article does not apply to us.
The authors note that their paper may not include all neurological adverse reactions, This is likely because those unreported reactions were not serious ones.
The article does not prove or disprove that a vaccinated individual may develop PN, or whether vaccination can make a pre-existing case of PN worse, as some posters above have reported.
I too am a sufferer of PN. I have all 3 shots, with only a slightly sore arm to report. I understand the terrible frustration of not having an answer to the cause of the disease, nor an adequate treatment.
Unfortunately, the article being discussed does not provide us with this information.
Furthermore, from the zeal expressed by some posters when discovering this article ("at last", etc.) I sense that some of the posters take it as some form of enlightenment or knowledge which has been previously unavailable or hidden, perhaps as a conspiracy. This is simply not true.
All medications, including vaccines, have side effects, sometimes fatal ones. The covid vaccines are remarkably safe, although they too have side effects. In deciding whether or not to take them, we as patients should do a cost/benefit analysis. Do the benefits of taking the vaccine outweigh the costs? Since Covid can be a horrible disease, causing millions of deaths and serious longterm effects in those that survive, this is as close to a no-brainer as it gets. Moreover, the decision to not get the vaccine can imperil the health of contacts (like your child or grandma), and impede the development of herd immunity, which can negatively affect me and all the rest of us.
I am astounded and ashamed that so many in our country refuse to accept this. They look for needles ( pun intended) in haystacks to find reasons not to take a lifesaving medicine. Medical decisions should not be based on politics, unscientific rumors, or what one hears on talk radio, or well meaning forums such as this one.

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Well, having posted the link, I did read the full article and, while I agree it doesn’t focus entirely on PN, it does list some examples, including SFN, plus PN is certainly a neurological disorder.

I resent the implication that I’m an antivaxer making up the affect that I had from the vaccines. As a liver transplant patient, with three autoimmune diseases, I am a strong advocate for the vaccines. I got both shots, even though I had a reaction to the first. I believe you would find most people on this discussion have similar views.

I do a lot of medical research about my illnesses and take 25 pills a day just to survive. I don’t question the miracle of the vaccines, being brought back to life three times, the skills of my transplant surgeons, and all the other wonders of science.

All I want for myself and others who have developed PN or had their PN increase from the vaccines, is to get some recognition and help.

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@athenalee

Well, having posted the link, I did read the full article and, while I agree it doesn’t focus entirely on PN, it does list some examples, including SFN, plus PN is certainly a neurological disorder.

I resent the implication that I’m an antivaxer making up the affect that I had from the vaccines. As a liver transplant patient, with three autoimmune diseases, I am a strong advocate for the vaccines. I got both shots, even though I had a reaction to the first. I believe you would find most people on this discussion have similar views.

I do a lot of medical research about my illnesses and take 25 pills a day just to survive. I don’t question the miracle of the vaccines, being brought back to life three times, the skills of my transplant surgeons, and all the other wonders of science.

All I want for myself and others who have developed PN or had their PN increase from the vaccines, is to get some recognition and help.

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I did not intend to imply that you specifically were an anti-vaxxer, and I am truly sorry if my post upset you in any way. In fact, with your condition, you must be vigilant about any new treatment. I also did not mean to discount any symptoms that others may have developed after being vaccinated, or imply that they were imagined or not real.
As far as the article, it is true that PN was mentioned as a possible, and then only rare, adverse reaction to the vaccine. However, it is not logical to conclude from the article that PN is a possible adverse reaction simply because it is a neurologic disease.,
As we all know, there is a strong ant-vaccine sentiment among some elements in our country. Personally, I am wary of any comments that may support this point of view, as there is no scientific evidence to back it up, and it is causing great harm to those who refuse the vaccine, and others.
All of us on this forum have the same goal, that is, to relieve our suffering. In that, I'm sure we agree.

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A gentle reminder about Mayo Clinic Connect's community guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

Guideline 2 states:
2. Remain respectful at all times.
Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.

I would also include a caution of not making assumptions about other members.
If you wish to report an issue, please send me a message using this form: https://connect.mayoclinic.org/contact-a-community-moderator/

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@lisa53

It was gone entirely before the vaccinations. I should note that they flared my symptoms but not all my symptoms. If you don't mind a metaphor. If my symptoms were like a band, it is like the shots flared up the band - but some of the band members sat quietly. But the shots brought a couple of new members along - ones I had never heard play before. They played dully compared to the old band. Then, some of them stopped entirely. Only the new band members are still playing, and even one of them is quiet now.
I am sorry, I am a creative, and this is how my mind works.
Imagine the horror my doctors must view my descriptions of my symptoms with. Sometimes, I just get stared at. 🙂

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@lisa53 I love your metaphor! And I get it perfectly. I have a band of my own!

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@lk61

@dhamill I plan to get a flu shot tomorrow. I’ll report back in a few days. I’ve been hesitant this year. Haven’t missed a flu shot in 30 years but after Pfizer induced neuropathy I am a different person. The flu reports are already bad. I’m not sure if it’s media hype or what, but I’m going to take the plunge. Fingers crossed.

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I hope you are doing well after your flu shot. Still not sure if I will get mine or not. Take care and stay well.

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@dhamil

I hope you are doing well after your flu shot. Still not sure if I will get mine or not. Take care and stay well.

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@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at all. (Oh darn it didn’t just magically disappear 🤣). I’m still waffling on a Covid booster. Some days I think never again, other days I’m more worried about getting Covid. 😣

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@lk61

@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at all. (Oh darn it didn’t just magically disappear 🤣). I’m still waffling on a Covid booster. Some days I think never again, other days I’m more worried about getting Covid. 😣

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That’s great! I can definitely relate about the covid vaccine. I waver day to day myself. So scared of getting covid but just as scared of making my neuropathy worse! What a dilemma to be in! Will be somewhat relieved when the antiviral meds are available.

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Really? Your doctor is more concerned regarding neuropathy than deadly covid?

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@lk61

@dhamil, I got my flu shot Saturday and so far, no effects on the neuropathy at all. (Oh darn it didn’t just magically disappear 🤣). I’m still waffling on a Covid booster. Some days I think never again, other days I’m more worried about getting Covid. 😣

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Although fully vaccinated, staying out of stores, using Walmart pick-up into my trunk for groceries, pharmacy delivery for meds, curbside pick-up to back seat for restaurant food now and then, and faithful masking/distancing, no visiting indoors- I got break-through COVID- sick, sick, sick. Luckily was eligible for IV monoclonal antibodies, got better fast. Gave it to my husband, despite isolation and all precautions, he was also eligible also for the IV, got it on Day 2, symptoms very mild.
In our area now, the IV antibiotics are very precious- my rheumatologist told me 2 wks ago while at appt, that if you are eligible, you go into a lottery pool, if you are picked, you have to go to the main hospital of the health system (2 hour drive away) to receive the IV. Maybe check how it is in your area before declining the booster. CDC/my PCP says you have to wait 90 days after IV treatment to receive booster, we’re signed up for next week.

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