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?

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

@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?

Jump to this post

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

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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…

REPLY
@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…

Jump to this post

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/

REPLY

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

REPLY
@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…

Jump to this post

This is the first time I have heard about this. I have peripheral neuropathy which I have had for seven years. I developed it within two weeks of having my shingles vaccine and always felt this was a trigger it followed a year of cancer diagnosis and treatment so maybe that contributed as well but the numbness in my feet which developed into PN was the same month as this vaccine. I have had both Pfizer shots. My daughter didn’t want me to but I did anyway. So far,fingers crossed no worsening of symptoms No better either

REPLY
@shona

This is the first time I have heard about this. I have peripheral neuropathy which I have had for seven years. I developed it within two weeks of having my shingles vaccine and always felt this was a trigger it followed a year of cancer diagnosis and treatment so maybe that contributed as well but the numbness in my feet which developed into PN was the same month as this vaccine. I have had both Pfizer shots. My daughter didn’t want me to but I did anyway. So far,fingers crossed no worsening of symptoms No better either

Jump to this post

Hi @shona, Welcome to Connect. I've also had the shingrix vaccine but I had small fiber peripheral neuropathy before I got the shot and it hasn't made it worse for me. There is a lot of evidence of cancer drugs and other medications causing neuropathy so you may be onto something with your treatment contributing.

If you want to learn more about neuropathy, you might take a look at my two favorite sites for learning more.
— Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview
— Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

Are you on any treatment for your neuropathy or do you just have the numbness?

REPLY

Hi John. I don’t take medication for it anymore as it really badly affected me. Took me months to wean myself off the meds Just Panadol. But I take loads of supplements. Mega benfotiamine is helpful as is magnesium vit b12 red krill oil vitamin d3 probiotics circumin and I also use a revitive for 30 minutes every night and lie on a shakti mat also for 30 mins per night. I have started using an stationery bike six months ago for 45 minutes per day. I should add that I have scoliosis of the spine (mild) bursitis in the hips and osteoarthritis quite badly in one knee. The PN mainly affects my feet and legs but I think it also contributed to bowel surgery I needed a couple of years ago. I also try and follow an anti inflammatory diet and eat as well as I can. I have coeliac disease and dairy affects me badly too so diet is high on my priorities I do believe it was a combination of a year of taking oral chemo radiation and top up with flu vaccine then finally the shingles vaccination which tipped me over the edge. The numbness started slowly in ball of one foot and developed over a year I’ve always believed the shingles vaccine precipitated it but haven’t heard anyone else say so until now. Was interesting. Oh I also now take celebrex at night but that’s to help my knee and bursa. Had sleep issues for about 15 years but find melatonin to be the game changer for me. Takes a long time to work though you need to be patient Sorry for the missive 😳

REPLY
@ricke

My reactions:
-PN from knees and elbows to my extremities, constant”goose bumps“ and tingling. Numbness severe in one foot and intermittent in hand( on same side of body ).
-Anosmia, intermittent and varying In severity .
-Intermittent severe chills , no pattern.
-Memory loss, extreme short term within minutes of event, topic discussed or material read.
No long term loss , just the opposite; I can recollect specific details 50 years ago . Also things that were at the time and continue to be insignificant to me.
-Fatigue.
– Sleep patterns completely disrupted.
– Mood swings, often alarming .
– Loss of appetite. I can go a day or two and have no desire to eat. However it has not affected my weight.
– Extreme reactions to foods that I have eaten my entire life up to the vaccine date and now I have all types of skin itching and stomach issues as if I have consumed a toxin.

There are others . These are not psychological, I do feel them very specifically . I am an engineer by education and trade, my analysis is methodical and detailed . I did maintain a log initially and the
“Items” continue to expand.

It’s a complete quality of life change for me.

Rick

Jump to this post

Starting sometime in late September, I noticed my sense of smell and taste is altered if not altogether missing. Mint flavored toothpaste and most fruits taste like fish. I cant smell or taste the flavors of coffee or bacon but can sense their bitterness and saltiness. I have been double vaccinated for COVID (Moderna) since 4/27/2021. I did get the Flu and Shingrix vaccines in late September 2021 (at the same time via CVS pharmacy) and had a pretty strong pain post-shot in the arm that received the Shingrix vaccine

I went to an ENT in early December and he tested for Covid antigens and for prior Covid infection. My antigen number was "7.48" which indicates I have a high number of antigens and my SARS CoV 2 AB (IgG) NUCLEOCAPSID test was "Negative". I also had a PCR test performed prior to Thanksgiving which was also Negative. My ENT ordered a Brain MRI with contrast which showed nothing unusual.

My current working theories of why I suddenly lost taste and smell are:

1. caused by Shingrix vaccine?
2. delayed reaction to Moderna vaccine?
3. Possible exposure to hydrogen sulfide gas from local beach I bike at every morning caused by rotting seaweed? It's around the same time that my wife and family kept saying "I smell sewage outside" (the beach is very near our house) when I couldn't smell it at all.

My ENT says that there are no other tests to perform to determine root cause. It's been 3 months and getting to be very frustrating and emotionally taxing.

REPLY
@dlloyd64

Starting sometime in late September, I noticed my sense of smell and taste is altered if not altogether missing. Mint flavored toothpaste and most fruits taste like fish. I cant smell or taste the flavors of coffee or bacon but can sense their bitterness and saltiness. I have been double vaccinated for COVID (Moderna) since 4/27/2021. I did get the Flu and Shingrix vaccines in late September 2021 (at the same time via CVS pharmacy) and had a pretty strong pain post-shot in the arm that received the Shingrix vaccine

I went to an ENT in early December and he tested for Covid antigens and for prior Covid infection. My antigen number was "7.48" which indicates I have a high number of antigens and my SARS CoV 2 AB (IgG) NUCLEOCAPSID test was "Negative". I also had a PCR test performed prior to Thanksgiving which was also Negative. My ENT ordered a Brain MRI with contrast which showed nothing unusual.

My current working theories of why I suddenly lost taste and smell are:

1. caused by Shingrix vaccine?
2. delayed reaction to Moderna vaccine?
3. Possible exposure to hydrogen sulfide gas from local beach I bike at every morning caused by rotting seaweed? It's around the same time that my wife and family kept saying "I smell sewage outside" (the beach is very near our house) when I couldn't smell it at all.

My ENT says that there are no other tests to perform to determine root cause. It's been 3 months and getting to be very frustrating and emotionally taxing.

Jump to this post

Hello @dlloyd64, Welcome to Connect. I can't imagine how frustrating it is to lose your sense of smell and taste. Especially if you don't know why and your ENT is not able to determine the cause. There are a couple of related discussions you might want to read to learn what others with similar symptoms have shared.

— Sudden loss of taste or smell. What could this mean?: https://connect.mayoclinic.org/discussion/loss-of-smell-and-taste-1/
— Loss of smell and taste: https://connect.mayoclinic.org/discussion/loss-of-smell-and-taste-1/

I wonder if these articles might help you figure out the cause or what questions you could ask your doctor.
– Impaired Taste https://www.healthline.com/health/taste-impaired
– Why Might My Sense of Taste Change? https://www.webmd.com/oral-health/oral-sense-taste-change#1

Have you recently changed any medications or been ill? Do you have an underlying condition that may affect your sense of taste?

REPLY

My symptoms started 3 months after the Shingrix vaccine. I never got the second shot I now have a rash on my neck that could be shingles. Going to the doctor next Tue.

REPLY
Please sign in or register to post a reply.
  Request Appointment