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?

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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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I had my second shingles shot yesterday. Last night my left arm felt tingly and kind of numb particularly a forearm part of my arm. Today I have a temperature low-grade and feel like I’m getting the flu my right arm is a little bit tingly. I’m just gonna watch the symptoms and see what happens. I had no problems after my first shot. Also I have been tested for Covid because I didn’t know if it is what could be side effects from COVID-19

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I started with neuropathy in my toes weeks after my second dose of Shingrix. I have had lingering neurological issues for about a year now. I hope you don’t have lingering ill effects. At first, I thought, “Oh well, it’s better than getting shingles,” but now I’m not so sure.

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@senorasherri

I started with neuropathy in my toes weeks after my second dose of Shingrix. I have had lingering neurological issues for about a year now. I hope you don’t have lingering ill effects. At first, I thought, “Oh well, it’s better than getting shingles,” but now I’m not so sure.

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Welcome @senorasherri, I'm sorry to hear you suffered adverse side effects from the Shingrix vaccine. The pain from neuropathy can be pretty bad and I'm sure the folks who have had shingles might feel the same way. Have you reported the side effects from the Shingrix vaccine?

"If you experience side effects from Shingrix, you should report them to the Vaccine Adverse Event Reporting System (VAERS). Your doctor might file this report, or you can do it yourself through the VAERS website , or by calling 1-800-822-7967." --- https://vaers.hhs.gov/index.html

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@mlc3

My husband has developed peripheral neuropathy affecting his feet in the last half year, and when I looked up possible causes outside of diabetes (since he is not diabetic and quite healthy with a very healthy lifestyle), I saw infectious causes including viruses like the one which causes shingles. That piece of information immediately made me line up my husband’s receiving the 2-vaccine Shingrix vaccine series with the onset of his peripheral neuropathy...tingling in his feet after the first one and now after the second one the symptoms of numbness and tingling have worsened. How is your neuropathy now? Has it lessened with the passage of time or are you having to manage it with prescriptions or therapies?

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Hello, I received my 1st Shingrix vaccine a few weeks ago. I started getting pins and needles in my hands and feet and even on my legs on occasion. I had a blood test for diabetes and for thyroid issues. Everything fine...Then I started thinking of what it could be and I now think it is related to the Shingrix vaccine. How is your husband? Bev

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@kelleybussell

I’m yrs late on joint this. I wish I would have seen it earlier. I had my first shingles shot. Not getting the second one. Have an appointment for testing in 2 weeks. Doctor suspects peripheral neuropathy. I have never had anything like this before. There has to be a connection.

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I am so sorry that you had this reaction from the first shot. Could you describe your reaction.
I had shingles in Oct2021. I have been struggling with severe post herpetic neuropathy in my abdominal area. My life has changed so much, and now my dr recommends that I get the shingles vaccine,, I’m afraid I will get worse.

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@sallydolan

I am so sorry that you had this reaction from the first shot. Could you describe your reaction.
I had shingles in Oct2021. I have been struggling with severe post herpetic neuropathy in my abdominal area. My life has changed so much, and now my dr recommends that I get the shingles vaccine,, I’m afraid I will get worse.

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I already had idiopathic peripheral neuropathy when I contracted shingles in October 2020. I was weakened by cancer radiation and chemotherapy treatments I was having. My shingles was in my left arm, and the pain in the nerves from neck to wrist in that arm stayed 6 months, over the normal PN pain and tingling in that arm.
As soon as allowed, I got the 2 Shingrex vaccines, having to carefully time around getting the Covid vaccines as well. All I can say is that the vaccines, for me, were nothing compared to how I suffered with getting Shingles!
My regret is that I didn’t get the shots at age 50, before I ever developed Neuropathy or the dreaded Shingles. But when I was 50 the vaccine mostly used was for 60 yr olds, and with Shingrex they said it was for 50 years old, but I fell through the cracks and didn’t get the memo….. everyone is different though, listen to a doctor you trust.

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Yes, I developed nerve pain, tingling in my feet and hands as well as some warm sensations on the calf of my left leg. This was my 1st vaccine of Shingrix. It didn't start for about a week, so didn't even think of the vaccine. It has continued now for about 6 weeks, but has decreased somewhat. I had blood tests because I thought maybe it was diabetes or a some other issue. Blood work came back normal. I am not getting the 2nd one! Very upsetting and concerning!

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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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I recently had my 2nd Shingrix shot, it did not worsen my neuropathy which for me started shortly after I begsn taking Anastrozole. I switched to Letrozole and my other side effects trigger finger, De Quervain’s Tenosynovitis resolved after another 6 weeks of PT, but the neuropathy has never improved.

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@mrsmary

I recently had my 2nd Shingrix shot, it did not worsen my neuropathy which for me started shortly after I begsn taking Anastrozole. I switched to Letrozole and my other side effects trigger finger, De Quervain’s Tenosynovitis resolved after another 6 weeks of PT, but the neuropathy has never improved.

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Welcome @mrsmary, You mentioned your neuropathy started shortly after taking Anastrozole and then you switched to Letrozole. I did see an article that may explain the connection to neuropathy --- "Do aromatase inhibitors cause neuropathy?
Another mechanism is that AI could have caused SjS and neuropathy or triggered the onset of subclinical SjS in this patient. SjS may have mostly subclinical course, and the diagnosis of SjS is delayed because of this subclinical course." --- Does Aromatase Inhibitors Cause Sjogren’s Syndrome and Polyneuropathy?: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5649745/

Has your doctor offered any treatments to help with the neuropathy symptoms?

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No. I just switched oncologists and we went over my concerns I brought up, one being a swollen ankle without any pain. She had her nurse check back with me the following week and it was still swollen, my oncologist sent me for an ultrasound on my ankle up to my groin to rule out any possibility of a blood clot, thankfully nothing. But I failed to mention my neuropathy when I met with the Dr,, but did describe it to the nurse when she called about my ultrasound—she said my description of it sounded like neuropathy but that AI drugs don’t cause it. I thought I had seen the article you referenced, I will contact my oncologist.
Thank you,
Mary

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