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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@colleenyoung

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Oops...sorry, Colleen, for using All Caps in my message prior to yours! Actually, I think in a couple of instances I meant to be shouting, in a good way, for emphasis, not at any person or group of people. Won't do it again, Not good electronic etiquette. Bless you for all you do for so many! elizabeth

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@lmill7

To Revisl, I feel for you n all the rest. I use herbals n Xtra vitamin supplements to deal with th neuropathy. Mine is very severe but I follow neuropathy sites to get info
Evening primrose oil 1300 mg 3-4 / day, St. John’s wort 1-3 ea day , kava 700 mg 3 x / day. I also do some amino acids n high potency B complex. I also started looking at homeopathic add-ons because med changes sometimes don’t cover th pins n needles or some don’t cover th nerve pain itself. Voltaren gel n any numbing lotion /cream also helps.
I wish all of you luck because neuropathy is very underserved in our medical fields. My pain doctors are great but for me only very strong meds help n our gov. Has decided we don’t need them. It used to b we were judged on our own actions.

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Hello @lmill7 and welcome to Mayo Clinic Connect. I see that you are replying to @revisl to provide support/understanding with regard to neuropathy pain, which you know personally as well.

I am so glad to hear you have found good pain doctors. How did you arrive at your current Rx and supplement combination and how long have you been on your current regimen?

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Getting back to the original topic, data from the UK (see link below) on immediate vaccine side-effects from a very large sample is quite interesting, even if it is based on self-reporting. I notice that exacerbated PN is not reported in the study which suggests that it is not a common reaction. However, that's scant comfort to those that do experience permanent negative effects and it would be a pity if it was therefore ignored by the medical community. I am personally interested in whether adverse PN reaction is limited to certain types of PN and/or certain vaccines. Is there something about mNRA vaccines that make a negative PN reaction more likely?

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00224-3/fulltext
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@jonathanc

Getting back to the original topic, data from the UK (see link below) on immediate vaccine side-effects from a very large sample is quite interesting, even if it is based on self-reporting. I notice that exacerbated PN is not reported in the study which suggests that it is not a common reaction. However, that's scant comfort to those that do experience permanent negative effects and it would be a pity if it was therefore ignored by the medical community. I am personally interested in whether adverse PN reaction is limited to certain types of PN and/or certain vaccines. Is there something about mNRA vaccines that make a negative PN reaction more likely?

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00224-3/fulltext

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Thank you for the link. This is what I concluded by reviewing the VAERS data as well. More study is, of course needed. I will say that my initial hyper-inflammatory vaccine reactions were both to traditional, non-mRNA types, and that PN reactions have been reported in VAERS as far back as 2007.
Now we need to push either a researcher or one of the pharmas to take a deeper look to answer the questions about who is most affected and if there are ways to mitigate.
Sue

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Agreed Sue. Interesting that there were 2000 cases of burning in the UK study which is my predominant aftereffect. Odd though that they classify it as an allergic reaction. I fear that only some media attention will galvanize a closer look...

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@joeyd5641

You're the first one we've come across that never had neuropathy and then got it from the shot. This should be a concern to the cdc

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I never had neuropathy and developed after 1st covid vaccine (moderna). It has not gotten better and I’m going on 5 months. MDs I’ve seen said it must be from vaccine but haven’t seen it before, I have been told they have seen similar symptoms in post covid patients. I did not have covid (had nucleocapsid test to confirm). I did not get second vaccine. I have filed a report with VAERS

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@lk61

I developed neuropathy for the first time in my life after my first Pfizer dose in Dec. Took subsequent dose in Jan. Almost 5 months later now, neuropathy still going strong. My body is completely changed.

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I had the same thing happen after moderna and it’s still not improving 5 months out. I’m worried its not going to resolve and MDs have no idea what to tell me as far as what to expect bc they haven’t seen it

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@tracyt

I had the same thing happen after moderna and it’s still not improving 5 months out. I’m worried its not going to resolve and MDs have no idea what to tell me as far as what to expect bc they haven’t seen it

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So very similar to my own case except I did take my 2nd Pfizer dose. I am encouraged by the fact that at least it doesn’t seem to be getting any worse. And I don’t have numbness or pain that is bad enough to affect my mobility or balance. Predominantly burning in my feet these days. I feel like we will hear more of it as time goes by. I’ll look forward to keeping up with your progress through this forum.

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@tracyt

I never had neuropathy and developed after 1st covid vaccine (moderna). It has not gotten better and I’m going on 5 months. MDs I’ve seen said it must be from vaccine but haven’t seen it before, I have been told they have seen similar symptoms in post covid patients. I did not have covid (had nucleocapsid test to confirm). I did not get second vaccine. I have filed a report with VAERS

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Hello @tracyt and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience following your vaccine. Filing a report with VAERS will provide helpful information. Did your doctor suggest that?

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@amandajro

Hello @tracyt and welcome to Mayo Clinic Connect. Thank you for joining the conversation and sharing your experience following your vaccine. Filing a report with VAERS will provide helpful information. Did your doctor suggest that?

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I did file a report with VAERS early on and they called me a month or two later based on my vsafe answers but they only asked a couple questions and couldn’t give me any info regarding if there were other similar cases. My neuro filed a consult with CISA regarding my symptoms and whether to get second dose and the answer was very vague and basically said I need to discuss risk/benefits with my provider. In the end I didn’t get second dose bc the MDs (as well I) were afraid it might make my symptoms worse. It’s just very frustrating having these painful symptoms and the doctors I have seen don’t really know what to say other than it has to be from vaccine.

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