COVID vaccines and neuropathy

Posted by cue @cue, Feb 15 12:51pm

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?

@amandajro

Hello @lmichelle14 and welcome to Mayo Clinic Connect. I completely understand your hesitation and concern. Feeling pressured on top of all of that is also incredibly difficult.

Can you share what reasoning your neurologist gave you when he/she suggested you get the vaccine?

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It was through an email but he basically said that he recommend that I get it because the virus is nasty.

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@amandajro

Hello @gianlucapirro and welcome to Mayo Clinic Connect. I can see you have a desire to be vaccinated but are also concerned about aggravating your SFN, which is understandable. Can you clarify if after three months your post-vaccine symptoms have went away or been worse?

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Hi Amanda. Thank you. High systolic blood pressure still persists (135-140 mm/hg). I specify that I have never had episodes of hypertension. This is due to the toxicity of the spike protein. Pain in the legs persists, especially the knees and big toe of the left foot. Immediately after the first shot I had tingling all over. Insomnia is improving and intestinal disorders too. Some abdominal pain remains but I have had total loss of appetite and nausea. In short, a total disaster that I never expected. I thought Pfizer gave less trouble than viral vector vaccines

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@gianlucapirro

Hello eveybody. I write from Italy. I have a mild small fiber neuropathy. I never had any particular symptoms except leg discomfort that does not continue to come and go.
On March 4th I had the first shot of Astrazeneca Vaccine (similar J&J) and I had a noticeable worsening on pains, burning, tingling, high blood pressure, digestive disorders. Fortunately, after three months it seems that almost all the symptoms are returning but given the situation I gave up the second shot.
I am undecided whether to try a new vaccine like Pfizer but I read that many of you have also had a lot of problems with Pfizer. Will you continue to be vaccinated?
Doctors deny a correlation between vaccines and neurological problems but obviously this is not the case. What did your neurologists advise you?

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I got Pfizer and developed burning in my feet and legs. Pin pricks in my arms and hands and numb fingers. Because of this I couldn’t bring myself to get my second Pfizer. What did your doctor say about switching to J&J? How long would you have to wait from the first shot? I wasn’t aware we could do that. Hope you are feeling better soon.

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Six weeks out now from pfizer part 1 and I have to say that the nerve damage caused by my immune system overreaction to the vaccine seems permanent and something i have to live with.. if you can stomach the side effects I certainly recommend Lyrica.. at least it suppresses the otherwise relentless burning…

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@dhamil

So sorry you are dealing with this. I am too. I developed pain and burning right after my first dose in my feet and legs. Did the first dose increase your pain? Wishing you well!

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I noticed major change 4 days after 2nd dose. Looking back I think I had some mild tingling hands feet after dose 1. No marked pain, just burning and tingling along with the numbness and weaker. It may take another year or so for all this COVID to sort itself out regarding long term side effects from the virus and vaccine. I believe in the vaccine and do think I could have had a worse case if I had gotten COVID. (Presuming my symptoms are vaccine related- but still unknown)

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@dhamil

I got Pfizer and developed burning in my feet and legs. Pin pricks in my arms and hands and numb fingers. Because of this I couldn’t bring myself to get my second Pfizer. What did your doctor say about switching to J&J? How long would you have to wait from the first shot? I wasn’t aware we could do that. Hope you are feeling better soon.

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At the moment I decided not to get a second shot and I will evaluate in September-October. A second shot with J&J hasn't been experienced by anyone yet. In Germany they are doing second shot with Pfizer.

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I had onset of arm and leg pain at night after Moderna vaccine. Could the vaccine have caused this?

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@gianlucapirro

At the moment I decided not to get a second shot and I will evaluate in September-October. A second shot with J&J hasn't been experienced by anyone yet. In Germany they are doing second shot with Pfizer.

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I’m sorry I meant to say Pfizer not J&J. I guess I inadvertently said that because I’ve been wondering if it was safe/helpful for me to switch to J&J from Pfizer. But sadly That’s probably not going to help because from what I’ve been reading on here people have gotten neuropathy from all 4 vaccines. The worst part is we are reporting it but no one is acknowledging this is happening much less giving us any kind of guidance when it does. I symptoms started 18 hrs after my shot and continued to worsen. My PCP said don’t get the second dose but my neuro
advised to get it no matter how much more pain it caused. I don’t think he believed me, he said he hadn’t heard of any other patients reporting this. As bad as I wanted to be protected from covid to live a normal life again, hug my grandchildren, I just couldn’t bring myself to do it. Now, After One shot I’m left with not much immunity and most likely permanent pain! And no answers from Pfizer or the CDC on this.They deny it’s related. We all can’t be a coincidence! Wishing you continued improvement.

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@amandajro

Hello @lmichelle14 and welcome to Mayo Clinic Connect. I completely understand your hesitation and concern. Feeling pressured on top of all of that is also incredibly difficult.

Can you share what reasoning your neurologist gave you when he/she suggested you get the vaccine?

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With any drug, there will be a very small percentage of people that have adverse affects, possibly death. It is just the risk associated with taking any drug.

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@dhamil

I’m sorry I meant to say Pfizer not J&J. I guess I inadvertently said that because I’ve been wondering if it was safe/helpful for me to switch to J&J from Pfizer. But sadly That’s probably not going to help because from what I’ve been reading on here people have gotten neuropathy from all 4 vaccines. The worst part is we are reporting it but no one is acknowledging this is happening much less giving us any kind of guidance when it does. I symptoms started 18 hrs after my shot and continued to worsen. My PCP said don’t get the second dose but my neuro
advised to get it no matter how much more pain it caused. I don’t think he believed me, he said he hadn’t heard of any other patients reporting this. As bad as I wanted to be protected from covid to live a normal life again, hug my grandchildren, I just couldn’t bring myself to do it. Now, After One shot I’m left with not much immunity and most likely permanent pain! And no answers from Pfizer or the CDC on this.They deny it’s related. We all can’t be a coincidence! Wishing you continued improvement.

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I don't know if I would be so quick to assume the pain is permanent. Many of us have experienced relief over time from our symptoms, some with medication and some without. If your neurologist doesn't believe you, perhaps it is time to contact someone else.

The neuropathy side effect is on the radar of the CDC and the manufacturers, it is just a matter of determining how frequent, who, etc – all will be part of the official review for permanent approval.

Sue

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@dhamil

I’m sorry I meant to say Pfizer not J&J. I guess I inadvertently said that because I’ve been wondering if it was safe/helpful for me to switch to J&J from Pfizer. But sadly That’s probably not going to help because from what I’ve been reading on here people have gotten neuropathy from all 4 vaccines. The worst part is we are reporting it but no one is acknowledging this is happening much less giving us any kind of guidance when it does. I symptoms started 18 hrs after my shot and continued to worsen. My PCP said don’t get the second dose but my neuro
advised to get it no matter how much more pain it caused. I don’t think he believed me, he said he hadn’t heard of any other patients reporting this. As bad as I wanted to be protected from covid to live a normal life again, hug my grandchildren, I just couldn’t bring myself to do it. Now, After One shot I’m left with not much immunity and most likely permanent pain! And no answers from Pfizer or the CDC on this.They deny it’s related. We all can’t be a coincidence! Wishing you continued improvement.

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I wrote to Anne Louise Oaklander but i didn't get any reply. Same thing in Italy. Neurologists do not express any opinion about vaccine and neuropathy

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Hi everyone. My UK neurologist and Belgian neurologist believe the vaccine caused my pin and needles after Moderna first shot. One thinks I should get 2nd dose, the other told me not to. I am seeing a third one to take my decision… neuropathy is not an easy thing to accept from a vaccine…Willkeep you posted.

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