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?

Hello @ttmt285 and welcome to Mayo Clinic Connect. I am sorry to hear of your reaction to your second Shingrix shot. What day post-shot are you now and how are you doing?

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I received the shingles shot in November 2019 and one month later my right foot started going numb. Advance to todays date both feet are numb and both hands. When I sit the pain is severe. Before I got the shot I was in great shape and now I'm a mess. Balance is off and if I close my eyes I'll fall over if I'm not holding on to something.

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@markofex1

I received the shingles shot in November 2019 and one month later my right foot started going numb. Advance to todays date both feet are numb and both hands. When I sit the pain is severe. Before I got the shot I was in great shape and now I'm a mess. Balance is off and if I close my eyes I'll fall over if I'm not holding on to something.

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Hello @markofex1 and welcome to Mayo Clinic Connect. I am sorry to hear about your decline in health. Have you been seeing a neurologist? What are you doing for your pain?

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I got my first Shingrix vaccine Nov 2020 approximately 2 days after I started developing foot pain now 7 months later the pain is so debilitating I can hardly walk. I won’t get the second one

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@markofex1

I received the shingles shot in November 2019 and one month later my right foot started going numb. Advance to todays date both feet are numb and both hands. When I sit the pain is severe. Before I got the shot I was in great shape and now I'm a mess. Balance is off and if I close my eyes I'll fall over if I'm not holding on to something.

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I also, had my shots in 2019. Same thing with me, feet, burning throughout body, affected legs, etc. Had every test done under the sun including neurologist testing and nothing was found. As fast as it came on it lasted 4 months then disappeared, now the burning and numbness started again in the feet only when I sleep. Who knows what these vaccines can do, and if things can be recurring. I had to have therapy on my legs because of the vaccine as I had no balance, could hardly walk, etc.

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@contentandwell

@charann2000 the original shingles, vaccine, zostavax is live, the newer one, shringrix, is not.
from the Mayo Clinic site:
Zostavax is a live vaccine given as a single injection, usually in the upper arm. Shingrix is a non living vaccine made of a virus component. It's given in two doses, with two to six months between doses.

I’m not sure why, but being a Post-transplant patient I can not get either. I am told that they have not decided on shringrix, but zostavax is definitely is out, being live.
Have any other post transplant patients here been told anything more about being able to get the zostavax shots?
JK

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My husband is a two time stem cell transplant patient, he was told at Mayo not to get the shingles vaccine. His current oncologist has not reversed that recommendation with the newer vaccine.

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@auntieoakley

My husband is a two time stem cell transplant patient, he was told at Mayo not to get the shingles vaccine. His current oncologist has not reversed that recommendation with the newer vaccine.

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@auntieoakley First, I meant to ask if anyone else had been told to not get the shingrix vaccine.

Why was your husband told to not get Shingrix since it is not live? Is he by chance also a patient at Mass General? They are waiting for approval from the infectious disease department. Granted, I am sure that department was over-burdened the last year and a half but this has been going on since well before the pandemic.
JK

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@contentandwell

@auntieoakley First, I meant to ask if anyone else had been told to not get the shingrix vaccine.

Why was your husband told to not get Shingrix since it is not live? Is he by chance also a patient at Mass General? They are waiting for approval from the infectious disease department. Granted, I am sure that department was over-burdened the last year and a half but this has been going on since well before the pandemic.
JK

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It was my understanding that because it was a live virus, and he has had two stem cell transplants that it was a risky business. Then when they came out with shingrix some time later. Our current doctor said let’s wait and see. It could be because it is so new and my husband is off and on treatment for multiple myeloma, and he is somewhat fragile health wise. We haven’t revived that conversation since then. Our doctor is a proponent of vaccination. He revaccinated my husband with all the childhood vaccines after transplant.
Is Mass general holding it up for everyone or just certain groups of patients. Truth is I haven’t had it either, and since I have moderate peripheral neuropathy this thread is making me question the wisdom of getting it. I had shingles in 2019 and was told to get it after 6 months but then we were in a pandemic and then I got the COVID vaccine and they said wait at least 4 months which would be July.

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@auntieoakley

It was my understanding that because it was a live virus, and he has had two stem cell transplants that it was a risky business. Then when they came out with shingrix some time later. Our current doctor said let’s wait and see. It could be because it is so new and my husband is off and on treatment for multiple myeloma, and he is somewhat fragile health wise. We haven’t revived that conversation since then. Our doctor is a proponent of vaccination. He revaccinated my husband with all the childhood vaccines after transplant.
Is Mass general holding it up for everyone or just certain groups of patients. Truth is I haven’t had it either, and since I have moderate peripheral neuropathy this thread is making me question the wisdom of getting it. I had shingles in 2019 and was told to get it after 6 months but then we were in a pandemic and then I got the COVID vaccine and they said wait at least 4 months which would be July.

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@auntieoakley Sorry, I thought you meant he had been told to not get the Shingrix vaccine. I know that the prior one did have live virus in it so was not recommended for anyone with a compromised immune system. I did have that one when I was pre-transplant. I don't know how long it lasts though, it was quite a while ago.

I only know that the transplant department is not advising it for post-transplant patients. The ruling is determined by the infectious disease department but I don't know if other areas are also affected.

After seeing what my sister-in-law has gone through, and is still going through to some extent, I want to be protected. If your doctor says with your peripheral neuropathy it's OK to get it, I would get it. My husband had a post-retirement job where many other retired people were employed and he knew a couple of people who were out for months with shingles.
JK

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@contentandwell

@auntieoakley Sorry, I thought you meant he had been told to not get the Shingrix vaccine. I know that the prior one did have live virus in it so was not recommended for anyone with a compromised immune system. I did have that one when I was pre-transplant. I don't know how long it lasts though, it was quite a while ago.

I only know that the transplant department is not advising it for post-transplant patients. The ruling is determined by the infectious disease department but I don't know if other areas are also affected.

After seeing what my sister-in-law has gone through, and is still going through to some extent, I want to be protected. If your doctor says with your peripheral neuropathy it's OK to get it, I would get it. My husband had a post-retirement job where many other retired people were employed and he knew a couple of people who were out for months with shingles.
JK

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Thanks for that. I am usually first in line for any recommended vaccine. I am sure if my doctor says get it, I will. That being said I am going to ask one more time relating to this thread before I do that.

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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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I realize your post was from back in 2019. Wondering how your symptoms are now. I got a Shingrix vaccine, with the 2nd dose in Feb 2021 and have had similar symptoms to what you describe and more: burning, tingling, prickly, scratchy sensations in back, near elbows, above needs, calves, feet for 5 months now. Had thoracic MRI done – normal. Blood work for all kinds of things all came back normal. Getting an EMG done here soon. I took an antiviral med for 3 weeks (probably about 5 months too late) and now Gabapentin for the past month. All regular clothes feel like sandpaper on my back so the only clothes I can wear are anything made out of nylon. Can't sleep on cotton sheets, too scratchy. At least I can wear some clothes. Like you, hoping this doesn't last for life. There can be worse things, but aggravating when you try to do something good for your health and it turns out bad. If I would have known what negative things Shingrix could do, I would never have gotten the vaccine. Not all vaccines are good for people and anything we do, whether we get it or not, has risks. I have good days and bad days.

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@addy60

I realize your post was from back in 2019. Wondering how your symptoms are now. I got a Shingrix vaccine, with the 2nd dose in Feb 2021 and have had similar symptoms to what you describe and more: burning, tingling, prickly, scratchy sensations in back, near elbows, above needs, calves, feet for 5 months now. Had thoracic MRI done – normal. Blood work for all kinds of things all came back normal. Getting an EMG done here soon. I took an antiviral med for 3 weeks (probably about 5 months too late) and now Gabapentin for the past month. All regular clothes feel like sandpaper on my back so the only clothes I can wear are anything made out of nylon. Can't sleep on cotton sheets, too scratchy. At least I can wear some clothes. Like you, hoping this doesn't last for life. There can be worse things, but aggravating when you try to do something good for your health and it turns out bad. If I would have known what negative things Shingrix could do, I would never have gotten the vaccine. Not all vaccines are good for people and anything we do, whether we get it or not, has risks. I have good days and bad days.

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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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