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?

@cue. I have the same concerns with my neuropathy and lichen planus. Has anyone heard of issues with lichen planus and the vaccine? Was testing these conditions part of obtaining approval for a vaccine?

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I also have the same concerns, except I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. I have wondered if anyone with neuropathy and/or erythromelalgia (specifically) has received the Covid vaccine and what has been your results. Is there a erythromelalgia area I should be posting to instead? I am new to this Mayo site. Thank you.

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@jlander

I also have the same concerns, except I was diagnosed with erythromelalgia in 2018. It started in 2017, it then became dormant the fall of 2018, but surfaced again this past November 2020 and I have had flare since then. I have not resorted to medications other than aspirin, a topical cream and ice pack but may be looking into other medications after I give it another few months to see if it gets under control again. This still all new to me! I am 74. I have read a lot of comments on erythromelalgia and understand my pain and flare is not as bad as many people face but it is still there. I have wondered if anyone with neuropathy and/or erythromelalgia (specifically) has received the Covid vaccine and what has been your results. Is there a erythromelalgia area I should be posting to instead? I am new to this Mayo site. Thank you.

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Hello @jlander, Welcome to Connect. I have small fiber peripheral neuropathy and just received my COVID vaccine (Pfizer) last week and have the second one scheduled for Feb 26th. The only reaction I had was the arm was a little sore the first night but I've had no other symptoms. There is another specific discussion for erythromelalgia where you can meet others with the same condition and share your experience and learn what others have shared.

– Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/

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I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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@johnbishop

Hello @jlander, Welcome to Connect. I have small fiber peripheral neuropathy and just received my COVID vaccine (Pfizer) last week and have the second one scheduled for Feb 26th. The only reaction I had was the arm was a little sore the first night but I've had no other symptoms. There is another specific discussion for erythromelalgia where you can meet others with the same condition and share your experience and learn what others have shared.

– Erythromelalgia: https://connect.mayoclinic.org/discussion/erythromelalgia/

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John, Thank you so much for your information and including the link. Like many, I have been at a loss of where to get information. In 2018, a Neurologist defined my problem as EM. My primary doctor at the time did not know much about EM, and he has since retired. My current primary doctor seems to know a little more. No one in my family, that I knew of, had EM. For me, it just showed up one day. I am glad to hear your COVID vaccine experience has gone well.

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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I too have heard from several sources that it's more likely you will have more serious side effects on the 2nd shot than the first. My wife has PN and got the first shot on 2/5. Just a slightly sore arm for about a day. I hope the 2nd is not awful for her. Best, Hank

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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Hello @kathleen123, Welcome to Connect. I'm really sorry to hear that your first Pfizer COVID vaccine made your neuropathy symptoms worse. I'm scheduled for my 2nd dose Feb 26th. I don't think anyone can answer your question about the side effects and I agree with your internist that there just is not enough data to know. The CDC does have some information but I think it's still too early.

Local Reactions, Systemic Reactions, Adverse Events, and Serious Adverse Events: Pfizer-BioNTech COVID-19 Vaccine:
https://www.cdc.gov/vaccines/covid-19/info-by-product/pfizer/reactogenicity.html

My personal reason for getting the vaccine and the second one also is that which would be worse – getting COVID or having my neuropathy flare which may not be desirable but the lesser of two evils (IMHO). You might find the following Q&A helpful.

Mayo Clinic Q and A: Neurologic function and COVID-19: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-neurologic-function-and-covid-19/

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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Hi Kathleen, I have SFN and had my 2nd Pfizer vaccine on 2/10. With the first I experienced a flare a wk. after which lasted a week, I also had a sore arm; this time no sore arm but a persistent new symptom plus a few transient ones appeared right after. Not sure if it is a result of or co-incidental this time, the new symptom is a very annoying continuous buzzing/tingling sensation on my right foot/toes , no numbness or pain but prevents sleep; hopefully temporary. I also dreaded the 2nd vac. but never considered not getting it. I Wish you well whatever you decide. Helen

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@jesfactsmon

I too have heard from several sources that it's more likely you will have more serious side effects on the 2nd shot than the first. My wife has PN and got the first shot on 2/5. Just a slightly sore arm for about a day. I hope the 2nd is not awful for her. Best, Hank

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@jesfactsmon Hank please let us know how your wife does with the 2nd shot. I hope the best.

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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@kathleen123 Please keep us posted. We care

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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Good evening @kathleen123, I just noticed your inquiry and wanted to respond. I have Small Fiber Neuropathy with a considerable level of pain…..controlled by medical cannabis. I also am in the throws of Neuropathic Itch which is overwhelming at times. Because of these conditions, I talked to my clinicians and they indicated that I should proceed with the Pfizer vaccine doses. I had no problem with the first injected dose. Last Tuesday, I had the second dose. Everything seems normal. What are the significant adverse effects that you fear might be associated with the second dose? And, if you can…please share what you mean by "exacerbated".

What I was told was not to wait. I think you do need to take the second dose within a certain time for it to be effective? These things are hard to predict when there has not been time to follow up with everyone.

May you be content and at ease.
Chris

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Hi. I have a history of nueropathy that was dormant the last few years. the pfizer vaccine brought it back the next day. it went away after a week from the first shot, but like an idiot i went for the 2nd shot and it came back even worse,11 days out and its constant burning and itching.

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