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?

@ricke

I strongly disagree; I never had shingles however my internist suggested I get the vaccine since I turned 65 and had chicken pox as a child. I received the first shot March 2020 ( will never get 2nd) and have suffered every day since. I went from a extremely healthy individual, problem free, to a chronic disease sufferer all as a result of the vaccine. GSK the mfg. has been insulting in their
response to my inquiries about contraindications. Knowing what I know now I would have preferred to take my chances with getting shingles then the daily misery I am enduring. Based upon my own extensive research I will never get any future vaccination(s) under any circumstances , including COVID.
“Extensive Government testing” is a term frequently used however has extremely limited scope.

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Yikes! Ricke, I feel badly for you. What side effects did you get specifically, and they have lasted for a year!!?? I am seriously reconsidering getting the vaccine!

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I have small fiber PN and PMR. I received my first Shingrix vaccine Wednesday and have the second one scheduled for May 5th. The only side effect I had from the first shot was a sore arm on the arm where I received the vaccine. It didn't start until later in the evening and it's still tender if I touch the shoulder but not too bad. Hoping the second one goes as well. I have friends and family that have gotten Shingles and I really don't want to get it so it's worth any minor side effects for me.

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@JustinMcClanahan

Hello @joannerhodes. I am inviting @charann2000 to this conversation as they also have recently talked about having the shingrix vaccination.

@joannerhodes, neuropathy would certainly be a concerning side-effect, was this discussed as a potential side-effect with you when you were given the vaccination? Have you contacted your provider that gave the shot?

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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'm right there with you, but after skin biopsies, I was diagnosed with Small Fiber Sensory Neuropathy. All of this, suddenly, after taking the Shingrix vaccine.

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@charann2000

There are two different Shingles vaccinations, 1. The original "Shingles" shot is a one time shot; 2. but the newer "Shingrix Shot" is a two- shot process. If you got the Shingrix shot, you will need a second vaccination within two to six months of the first one for it to be completely effective. However, if your doctor administered the original Shingles Shot, it is a one shot process. You will have to contact your doctor's office to find out which variety of the shingles vaccination he administered to you. If he is a good physician, he should have told you or asked which of the two varieties of the vaccination you wanted. The newer "Shingrix" vaccination (two two-shot process) is greatly more effective than the older one-shot Shingles vaccine. However, your Part D Medicare Drug carrier would have to have it included in the vaccinations which they cover as it is a more expensive vaccination. I hope that this helps you understand that there are two different varieties of Shingles vaccines on the market today!

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I've had shingles 3 times, and while they are terrible, I would give anything in the world if I had never taken the Shingrix vaccine. It has changed my life forever and not for the better. I can barely walk many days and there is not a single day that I'm not in pain. I know a lot of people who took it and had no issues, however, I would never recommend it.

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@19jimmy57

I received the 2nd Shingrex dose on February 12, 2019. I am a 62 year old male and do not have diabetes. Two nights later in bed, I experienced intense itching on my legs, feet, arms and hands. A few nights later, I experienced intense "electrical tingling" throughout my body along with nausea and lower abdominal pain. I don't know how else to describe this awful sensation. By morning, it was gone. This quickly evolved into regular daily sensations of burning feet, itching, tingling, or pin pricks of pain in these same locations. I became so alarmed that I made an appt. at the Neurological Dept at the University of Michigan. They listened to my story, did some blood tests, and gave me an MRI of my neck. Their vague diagnosis was either cervical arthritis or inflammation brought on by exercising. They offered no explanation for the leg and foot symptoms. Their recommendation is to start taking Gabapentin and get something called cervical traction from a physical therapist. I did mention to them that I had recently gotten the 2nd Shingrix dose but at that time I had not yet realized that the symptoms started only two days later and they had no reaction in any case. (We only realized this fact last night when we looked at the date of the vaccination). The only side-effect I had from the first dose was an extremely sore arm. It has been just over three months now and my feet are burning as I write this. There are symptoms every day with some days better than others but this has taken the joy out of my life.I will be seeing my PCP in two days. My greatest fear is that this may never go away and i am really just p****d off about this. I realize that it is probably impossible to prove that my symptoms are due to Shingrix but the timing is certainly suspect. I wish I had never heard of Shingrix. – Jim in Michigan

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@19jimmy57 Did your symptoms ever subside? I experience the same thing only mine just got worse as time went on. I'm now 15 months out and have been diagnose with severe small fiber neuropathy. I would be interested to know if you found any treatment plan that helped you.

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@helennicola

Hi Hank, Don, everyone who has gotten sick after following their dr.’s advice which was to help or prevent illness has a right to be very angry. I think part of the problem is that dr.’s don’t know everything and don’t have the time to thoroughly research the possible side effects. I have also had 3 negative health related unnecessary operations in my life which have caused me much stress but decided against legal action because the deck is usually stacked and would not ultimately change anything. I learned that we must do our own research and make our own decisions re: our health and should not rely totally on our dr.’s. For what it’s worth; I developed SFN after getting a flu shot and taking Tamiflu, is there a connection, who knows??? Helen

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@helennicola , I would agree but I think that the issue here is that no amount of research would have identified the potential for SFN. The company that created the vaccine needs to be held accountable and it needs to be published as a potential side affect so that people who do research can make an educated decision.

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@slturley

@helennicola , I would agree but I think that the issue here is that no amount of research would have identified the potential for SFN. The company that created the vaccine needs to be held accountable and it needs to be published as a potential side affect so that people who do research can make an educated decision.

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Stephanie, agree totally, unfortunately it seems as if the public is never made aware of serious side effects until there are class action suits being filed! There should be strict laws governing this type of negligent behavior from big pharma to protect consumers. Helen

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@ricke

I strongly disagree; I never had shingles however my internist suggested I get the vaccine since I turned 65 and had chicken pox as a child. I received the first shot March 2020 ( will never get 2nd) and have suffered every day since. I went from a extremely healthy individual, problem free, to a chronic disease sufferer all as a result of the vaccine. GSK the mfg. has been insulting in their
response to my inquiries about contraindications. Knowing what I know now I would have preferred to take my chances with getting shingles then the daily misery I am enduring. Based upon my own extensive research I will never get any future vaccination(s) under any circumstances , including COVID.
“Extensive Government testing” is a term frequently used however has extremely limited scope.

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@ricke, Im in the exact same boat. I was extremely healthy and active prior to the Shingrix vaccine and I have suffered every day since. My activity has come to a complete halt as I can barely walk and I am in pain every single day.

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@johnbishop

I have small fiber PN and PMR. I received my first Shingrix vaccine Wednesday and have the second one scheduled for May 5th. The only side effect I had from the first shot was a sore arm on the arm where I received the vaccine. It didn't start until later in the evening and it's still tender if I touch the shoulder but not too bad. Hoping the second one goes as well. I have friends and family that have gotten Shingles and I really don't want to get it so it's worth any minor side effects for me.

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@johnbishop Hi John I had my shingles and shingrex shots never had any reactions just sore arm but I get that from flu shot also

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@slturley

@ricke, Im in the exact same boat. I was extremely healthy and active prior to the Shingrix vaccine and I have suffered every day since. My activity has come to a complete halt as I can barely walk and I am in pain every single day.

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Unfortunately, we have much in common.
I will be involved with stem cell therapy in the next few weeks . Traditional therapies and pharmaceuticals are not an option.
At the advice of my “new” doctor, under no circumstances will I ever get the 2nd Shingles shot nor any other vaccine. I have conducted extensive research domestically and internationally and have had some improvement with pain and peripheral neuropathy .
I have made extensive dietary modifications, PT and
exercise changes. All my improvements have been
as a result of thinking outside the “box”.
I wish there were more positive results to date.

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Hello @iampatella and welcome to Mayo Clinic Connect. I see you mentioned ricke and are reconsidering getting the vaccine.

What has changed your mind?

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