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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@tracyt

No I have not gotten second dose. It’s been 5 months and neuropathy isn’t resolved. Neurologist and PCP both were nervous of what my reaction might be to second dose in light of how I responded to first. They said it’s hard to know really bc it’s so new still

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I'm sorry to hear.
It is good that they were honest about not knowing what your reaction might be. (Better than the standard reply of "it's better than getting Covid"). Lots of uncertainties and we are all a bit insecure re decisions I guess.

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@sueinmn

Just one report here, but my daughter had a very strong reaction to her first Moderna dose, fever, nausea, pain, even had to have steroids to reduce systemic swelling of all her lymph glands.
At the direction of her PCP, she had the second dose because she works as a school nurse, her second reaction was about the same, but she has no lingering effects.
Sue

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I’m glad to hear she hasn’t had lingering effects! (Although doesn’t sound like it was fun!). If my side effects resolved I may have considered second dose but since they haven’t after such a long time it makes me nervous

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I am 5 weeks out from my first dose of Pfizer and still having new and increased neuropathy pain. It has gotten a little better but as bad as I want the booster I am scared to get it on top of my new pain. I also have an increase in my Tendinitis starting @4wks after shot. It’s been persistent where is in the past it would come and go and was much milder. Not sure if it’s related or not. I’m seeing a lot of people with neuropathy side effects from Pfizer and Maderma on here but not J&J. Has anyone had this side effect from J&J?

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@dhamil

I am 5 weeks out from my first dose of Pfizer and still having new and increased neuropathy pain. It has gotten a little better but as bad as I want the booster I am scared to get it on top of my new pain. I also have an increase in my Tendinitis starting @4wks after shot. It’s been persistent where is in the past it would come and go and was much milder. Not sure if it’s related or not. I’m seeing a lot of people with neuropathy side effects from Pfizer and Maderma on here but not J&J. Has anyone had this side effect from J&J?

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I can understand the reluctance to get a second dose when the first has caused such discomfort. I had a major inflammatory response to each dose, complete with resurgence of bursitis I thought was cured.
I still elected to have the second dose, which led to more inflammation.
Today I talked it over at length with my PCP and her response was that she had reacted as well due to her own chronic illness, but our discomfort paled in comparison to the long-haul syndrome she is seeing in many patients, including a 36 yo with a "mild case" who is now retired on disability due to heart and lung involvement and profound fatigue.
One RN daughter has a 16 yo student who now has heart failure, and her sister, also an RN, talks to long-haulers on the telemed line every workday, some of whom didn't even realize they had had Covid until after effects appeared.

Their collective advice to you is that Covid has many, perhaps as yet unknown, long term adverse effects. Get vaccinated to protect yourself, your family and friends. And, if vaccine side effects last longer than 4 weeks, contact your PVP and insist on being assessd/treated, whether for neuropathy, inflammation, or other issues.

Sue

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@dhamil

I am 5 weeks out from my first dose of Pfizer and still having new and increased neuropathy pain. It has gotten a little better but as bad as I want the booster I am scared to get it on top of my new pain. I also have an increase in my Tendinitis starting @4wks after shot. It’s been persistent where is in the past it would come and go and was much milder. Not sure if it’s related or not. I’m seeing a lot of people with neuropathy side effects from Pfizer and Maderma on here but not J&J. Has anyone had this side effect from J&J?

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I also got the 1st vaccine and had the side effects w/neuropathy. I was afraid but did go ahead with the second and the side effects for that were milder than the 1st. Still had some issues but not to the degree I had with the 1st vaccine. I am glad it is over and done with!

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To all of you who wonder if the Covid vaccine and its side effects are worth it, you might want to read about the remarkable strides we have made against Covid-19 in the past 4 months: https://connect.mayoclinic.org/discussion/some-positive-covid-19-vaccine-thoughts-and-statistics/

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@sueinmn

I can understand the reluctance to get a second dose when the first has caused such discomfort. I had a major inflammatory response to each dose, complete with resurgence of bursitis I thought was cured.
I still elected to have the second dose, which led to more inflammation.
Today I talked it over at length with my PCP and her response was that she had reacted as well due to her own chronic illness, but our discomfort paled in comparison to the long-haul syndrome she is seeing in many patients, including a 36 yo with a "mild case" who is now retired on disability due to heart and lung involvement and profound fatigue.
One RN daughter has a 16 yo student who now has heart failure, and her sister, also an RN, talks to long-haulers on the telemed line every workday, some of whom didn't even realize they had had Covid until after effects appeared.

Their collective advice to you is that Covid has many, perhaps as yet unknown, long term adverse effects. Get vaccinated to protect yourself, your family and friends. And, if vaccine side effects last longer than 4 weeks, contact your PVP and insist on being assessd/treated, whether for neuropathy, inflammation, or other issues.

Sue

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I agree with you, it’s just hard to get the booster while still having pain from the first shot. If I knew it wasn’t going to be permanent, it would be a no brainer. Thank you for your insight. It did give me a lot to think about.

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@suzanne2

I also got the 1st vaccine and had the side effects w/neuropathy. I was afraid but did go ahead with the second and the side effects for that were milder than the 1st. Still had some issues but not to the degree I had with the 1st vaccine. I am glad it is over and done with!

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I’m glad you had a good outcome.

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Because my immune system response to pfizer has reactivated by PN and led to further nerve damage in my feet and legs which has still not stabilized 5 weeks later I am certainly hesitant about a second shot and wondering whether it might be better to try and get the one shot adenovirus j and j vaccine for the second shot. Any advice welcome.

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