Shingrix and peripheral neuropathy

Posted by joannerhodes @joannerhodes, Feb 1, 2019

4 days after my 2nd Shingrix vaccination, I suddenly developed intense peripheral neuropathy in both feet…for the first time in my life…anyone else?

@johnbishop

Hello @addy60 — Welcome to Connect. @19jimmy57 did give an update that his symptoms were not due to the Shingrix vaccine in a later post here – https://connect.mayoclinic.org/comment/243864/

I had both Shingrix vaccinations a few months ago but only had a little fatigue and a sore arm from both. I'm sorry to hear your experience was not good. I think each of us has to weigh associated risks. I have known folks that had shingles and it's very painful and I definitely do not want to experience shingles.

You mentioned you will be having a nerve conduction test soon. Can you provide an update after your appointment?

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Thanks for pointing me to the updated post by 19jimmy57. Yes, will give an update on the nerve test later.

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when I first was diagnosed with neuropathy blood tests showed that I had a very high level of B6 (246) in my system. After I quit taking all supplements that content B6 my level came down to 35 however my non-diabetic neuropathy is getting worse. My Neurologist told me a year ago that it would take about 6 month to show some improvement. Just the opposite. I am watching my diet and drink lots of water. My lower legs are numb and pain full and swollen around the ankle. Makes i hard to sleep.

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@dipperlip1

when I first was diagnosed with neuropathy blood tests showed that I had a very high level of B6 (246) in my system. After I quit taking all supplements that content B6 my level came down to 35 however my non-diabetic neuropathy is getting worse. My Neurologist told me a year ago that it would take about 6 month to show some improvement. Just the opposite. I am watching my diet and drink lots of water. My lower legs are numb and pain full and swollen around the ankle. Makes i hard to sleep.

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I am curious about the high B6. My vitamin B12 was high then normal then high again when the neurologist checked my blood. I wonder about that and why it is. I have more that I need to fie out. They are looking for deficiency in the vitamins so I wonder what the highs mean if anything.

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@slturley

Are there many people experiencing neuropathy after the Shingrix vaccine? I received the first shot in Dec 2019 and in January I started having terrible leg cramps. In Feb, I took the 2nd shot and my cramps turned to spasms and then the neuropathy started. I came to Mayo in May and was diagnosed with Benign Cramp Fasciculation. However, by July the horrible burning and electrical shock started and after many tests and biopsy, I was diagnosed with Small Fiber Neuropathy. I have said all along that this all came from the Shingrix vaccine as I had no symptoms before I took the first shot, and within 6 months I was diagnosed with severe Small Fiber Sensory Neuropathy. My Vaccine was given at Duke Medical center and they are also the ones who diagnosed the small fiber neuropathy but I can't get anyone to admit that this all came from the Shingrix vaccine. How do you go from no symptoms to severe neruopathy in a couple months. Everything that I read says that SFN is very slow progressing… Have there been any treatments identified, that you know of, that helps? Thanks for posting this. It helps to know that I'm not alone, although I would wish this on noone.

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I am shocked to read about so many negative reactions to the Shingrix vaccine..After enduring neuropathy for 3 years after my chemo treatments, my feet finally starting feeling normal again.. I decided it was time to get my shingles shot, because I had shingles 2 years ago, and WHAM..Within 2 days I was right back to the nightmare of the burning, irritating pains from neuropathy..I now will tell everyone that the pain from the shingles is short lived…The neuropathy is forever..DON'T GET THE SHOT…

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@1luckyguy

I am shocked to read about so many negative reactions to the Shingrix vaccine..After enduring neuropathy for 3 years after my chemo treatments, my feet finally starting feeling normal again.. I decided it was time to get my shingles shot, because I had shingles 2 years ago, and WHAM..Within 2 days I was right back to the nightmare of the burning, irritating pains from neuropathy..I now will tell everyone that the pain from the shingles is short lived…The neuropathy is forever..DON'T GET THE SHOT…

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Hello @1luckyguy, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I've had neuropathy for 20+ years but I don't have pain only numbness. I went ahead and got the Shingrix shot after having the first Shingles shot a few years ago because I have friends and relatives that have had the shingles and I do not want to ever have those painful sores on me. Sorry that it affected your neuropathy.

Have you tried any alternative treatments or integrative therapy for your neuropathy? There is some information on the Foundation for Peripheral Neuropathy site you may find helpful — https://www.foundationforpn.org/living-well/integrative-therapies/

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I HAVE TRIED NUMEROUS THERAPIES PREVIOUSLY..WITH THIS NEW ONSET, I AM GOING TO BEGIN THE ELECTRIC STIM WHICH WORKED THE BEST FOR ME…

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