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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@mrsmary

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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I had swelling of the legs with the right one a little more swollen. It was really bad around the ankle. I also had the ultrasound to check for a blood clot which they ruled out. They then scheduled a lymphoscintagram and I found out I have lymphedema. I now have to wear compression socks that go just below the knees to help keep the swelling down during the day. It also helps if I can elevate my legs a little at night.

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Thank you, Mr. John,

You are on top on this PN and cannot say ENOUGH THANKS.
Be safe

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@mrsmary

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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@mrsmary, you may also be interested in taking part in the discussions in the breast cancer group:
- Breast Cancer https://connect.mayoclinic.org/group/breast-cancer/

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The shingles vaccine ruined my life. I was 100% healthy before receiving the shingles vaccine in 2014, but within two weeks developed rather severe neuropathy in both feet. My toes were completely numb and I had difficulty walking. In addition, the vaccine also caused a relatively rare condition known as erythromelalgia, which causes the feet to turn bright red and burn terribly.

Doctors were baffled by the sudden onset of two semi-debilitating conditions concurrently, until a brilliant podiatrist I saw diagnosed my conditions as being a reaction to the shingles vaccine I had received. He had experience with other patients who had the very same conditions and, like me, had received the shingles vaccine within a short time before the conditions manifested. He put me on gabapentin (1200 mg per day), which I still take to this day. It helps lessen the pain and burning, but does not cure or even come close to curing either condition. I refuse to take any opioids or other addictive painkillers.

It is now 2022 and I still suffer from peripheral neuropathy and erythromelalgia. I have "learned to live with it" but am no longer the very athletic, very fit person I was before the onset of these terrible conditions. I can no longer run, use a treadmill, do heavy weight-lifting, go mountain biking or hiking, play basketball or flag football, or enjoy any of the other strenuous or semi-strenuous activities I used to do on a regular basis. Now I must live a sedentary lifestyle and can be on my feet for no more than 20 minutes, max. My feet hurt and/or burn 75% of the time. Fortunately, immersing my feet in a pan of very cold water stops the burning, which I need to do several times a day. I can no longer wear socks of any kind, and can wear only extra-wide Crocs with a huge toebox. And no, I do NOT have diabetes; in fact, I'm not even close to being PRE-diabetic!

As a result of my life-altering negative experience with the shingles vaccine, I decided to forgo getting ANY type of vaccine, period. I have received NO vaccine of ANY type since 2014 and have not contracted a single virus, to include influenza, COVID-19, or even the common cold. (It no doubt helps that I take 20 immune system-enhancing supplements every day.) My only health issues are with my feet, thanks to the (expletive deleted) shingles vaccine. If you have not received the shingles vaccine and are undecided on whether to get it, my advice is to skip it. Why take a chance on experiencing the nasty, long-term side effects of the vaccine, as I have? Trust me, it's infinitely better to endure a single bout of shingles than a lifetime of pain and misery caused by neuropathy and erythromelalgia.

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@bwh

The shingles vaccine ruined my life. I was 100% healthy before receiving the shingles vaccine in 2014, but within two weeks developed rather severe neuropathy in both feet. My toes were completely numb and I had difficulty walking. In addition, the vaccine also caused a relatively rare condition known as erythromelalgia, which causes the feet to turn bright red and burn terribly.

Doctors were baffled by the sudden onset of two semi-debilitating conditions concurrently, until a brilliant podiatrist I saw diagnosed my conditions as being a reaction to the shingles vaccine I had received. He had experience with other patients who had the very same conditions and, like me, had received the shingles vaccine within a short time before the conditions manifested. He put me on gabapentin (1200 mg per day), which I still take to this day. It helps lessen the pain and burning, but does not cure or even come close to curing either condition. I refuse to take any opioids or other addictive painkillers.

It is now 2022 and I still suffer from peripheral neuropathy and erythromelalgia. I have "learned to live with it" but am no longer the very athletic, very fit person I was before the onset of these terrible conditions. I can no longer run, use a treadmill, do heavy weight-lifting, go mountain biking or hiking, play basketball or flag football, or enjoy any of the other strenuous or semi-strenuous activities I used to do on a regular basis. Now I must live a sedentary lifestyle and can be on my feet for no more than 20 minutes, max. My feet hurt and/or burn 75% of the time. Fortunately, immersing my feet in a pan of very cold water stops the burning, which I need to do several times a day. I can no longer wear socks of any kind, and can wear only extra-wide Crocs with a huge toebox. And no, I do NOT have diabetes; in fact, I'm not even close to being PRE-diabetic!

As a result of my life-altering negative experience with the shingles vaccine, I decided to forgo getting ANY type of vaccine, period. I have received NO vaccine of ANY type since 2014 and have not contracted a single virus, to include influenza, COVID-19, or even the common cold. (It no doubt helps that I take 20 immune system-enhancing supplements every day.) My only health issues are with my feet, thanks to the (expletive deleted) shingles vaccine. If you have not received the shingles vaccine and are undecided on whether to get it, my advice is to skip it. Why take a chance on experiencing the nasty, long-term side effects of the vaccine, as I have? Trust me, it's infinitely better to endure a single bout of shingles than a lifetime of pain and misery caused by neuropathy and erythromelalgia.

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So sorry to hear of this terrible experience with the shingles vaccine.
Do you know whether the vaccine you got in 2014 was the older vaccine or the newer 2-dose vaccine (Shingrix I think it is called)? (I am deciding whether to get the newer one and your experience really gives me pause on that decision)

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After my second Shingrix booster (no other shots given), I noticed I had neuropathy in the forearms and hands of both arms on the third evening after a bout of flu-like symptoms. The first booster did not result in either of those effects. It has only been 4 days though, so I hope those symptoms go away.

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@mattmccullough

After my second Shingrix booster (no other shots given), I noticed I had neuropathy in the forearms and hands of both arms on the third evening after a bout of flu-like symptoms. The first booster did not result in either of those effects. It has only been 4 days though, so I hope those symptoms go away.

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Welcome @mattmccullough, I'm sorry to hear that the second Shingrix booster had the bad side effects. Have you or your doctor reported the side effects to the VAER System? -- https://vaers.hhs.gov/

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@rainna
I have never had any type of reaction to any vaccines that I’ve had.
I’ve had shingles and It’s awful so wanted to reduce future risks.
Jake

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@rainna

So sorry to hear of this terrible experience with the shingles vaccine.
Do you know whether the vaccine you got in 2014 was the older vaccine or the newer 2-dose vaccine (Shingrix I think it is called)? (I am deciding whether to get the newer one and your experience really gives me pause on that decision)

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I already had severe idiopathic neuropathy before I was diagnosed with cancer and was undergoing treatment. While down and out, I got shingles. The Lord was testing my strength, Shingles was terrible. As soon as I was allowed, I got the 2 Shingrex shots, which were filled with 2 Covid vaccines in between as my time in line for those came up and were also priority for my cancer situation. Anyway, for me, it seems my reactions to all 4 of those (plus a later Covid booster and flu shot) were “normal” . My neuropathy didn’t change, it continued to offer its unpredictable variability day to day. But I did get mental relief of being able to better fight or avoid Covid and repeat Shingles (and flu). But, we’re all different.

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@dbeshears1

I already had severe idiopathic neuropathy before I was diagnosed with cancer and was undergoing treatment. While down and out, I got shingles. The Lord was testing my strength, Shingles was terrible. As soon as I was allowed, I got the 2 Shingrex shots, which were filled with 2 Covid vaccines in between as my time in line for those came up and were also priority for my cancer situation. Anyway, for me, it seems my reactions to all 4 of those (plus a later Covid booster and flu shot) were “normal” . My neuropathy didn’t change, it continued to offer its unpredictable variability day to day. But I did get mental relief of being able to better fight or avoid Covid and repeat Shingles (and flu). But, we’re all different.

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Thanks much for your added detail here. It really does sound as though you have been tested for sure!! Glad you are able to keep on going.

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