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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@colleenyoung

@dont, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam, so allow me to post it here.

Don, found these 2 articles on potentially reversing PN:
- Study finds drugs that can reverse nerve damage https://www.sbrc.ca/2017/01/study-finds-drugs-that-can-reverse-nerve-damage/
- Anti-Muscarinic Drugs May Reverse Peripheral Neuropathy https://www.practicalpainmanagement.com/resources/news-and-research/anti-muscarinic-drugs-may-reverse-peripheral-neuropathy

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@dont
Don, as you already know, but others may not, both of these articles that Colleen has placed here on your behalf relate to the antimuscarinic drug pirenzepine, which is being repurposed to help prevent and possibly reverse neuropathy symptoms. The implications for this are pretty exciting. There are trials ongoing, and from what I gather they may be into phase 3 trials by now. The company spearheading the effort, Winsantor, stands to gain tremendously from this if it successfully becomes an FDA approved treatment as there are many millions of people who might potentially become their customers in effect. I for one am hoping for the final breakthrough to happen. With so much to gain for whoever finds the magic bullet it seems like it's only a matter of time when something big is going to come along to help PN sufferers. Hopefully, this is it. Best, Hank

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@sunnyflower

Hi Hank and Jen, wow, learn something new every day! I've never heard this before. Be well, Sunny

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@jesfactsmon @sunnyflower What a conundrum. I had chickenpox in high school and a mild case of shingles in my early 40’s.

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@sunnyflower

Jen, not funny but your last question had me LOL! Your friend, Sunnyflower 🤣

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@sunnyflower @jesfactsmon curlytop cuties? I mean it lovingly. Oh how I wished we all
Lived near each other!!

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@dont

Hi Jeff, are you saying that you are aware of at least one lawsuit against Shingrix? or the previous Zostavax?? Don

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Hi @dont
No, I don't know of any lawsuits against Shingrex, but I'd be surprised if there weren't any. Pharma gets sued for almost anything these days, whether there is merit or not. And remember, no medicine or vaccine is perfect or without adverse reactions. The overwhelming evidence is that Shingrex benefits outweigh the risk by many orders of magnitude.
A cursory web search will turn up numerous class action suits against Zostavax.

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@bustrbrwn22

@sunnyflower @jesfactsmon curlytop cuties? I mean it lovingly. Oh how I wished we all
Lived near each other!!

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@ EVERYONE I am so utterly confused who is talking to whom, here, that I just wanna send love to you all. I am one of the curly haired cuties. My husband is the other!!! Lori Renee

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@colleenyoung

@dont, I noticed that you wished to post a URL to web resources with your message. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the links you wanted to post are not spam, so allow me to post it here.

Don, found these 2 articles on potentially reversing PN:
- Study finds drugs that can reverse nerve damage https://www.sbrc.ca/2017/01/study-finds-drugs-that-can-reverse-nerve-damage/
- Anti-Muscarinic Drugs May Reverse Peripheral Neuropathy https://www.practicalpainmanagement.com/resources/news-and-research/anti-muscarinic-drugs-may-reverse-peripheral-neuropathy

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Thank you

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I have an update on my status today after consulting with the Neurologist. I do have Small Fiber Mediated Painful Neuropathy. Burning sensations from sensory nerves of my feet and legs sometimes going up the thighs to groin area. He agreed that it is probably from the second Shingrix injection. An autoimmune response. He wants additional blood tests in part to check for heavy metals & B6 and gave me a prescription for Gabapentin and for me to get off all supplements. Don

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Did you get the sense your Neurologist might know something about a Class Action Suit or Tort?

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@dont

I have an update on my status today after consulting with the Neurologist. I do have Small Fiber Mediated Painful Neuropathy. Burning sensations from sensory nerves of my feet and legs sometimes going up the thighs to groin area. He agreed that it is probably from the second Shingrix injection. An autoimmune response. He wants additional blood tests in part to check for heavy metals & B6 and gave me a prescription for Gabapentin and for me to get off all supplements. Don

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Gabapentin works for very few people. It’s basically an anti-seizure drug. I assume you had a skin biopsy to confirm SFN, which is about 88% accurate. I have been diagnosed with idiopathic SFN. My guess is that your blood work for heavy metals and B6 will be normal. Doctors have very little in their bags to effectively treat SFN, so they just keep changing medication doses. Next they probably will try Lyrica, another anti-seizure drug. Cymbalta, a SNRI, May end up,being your best bet, but it not great either. My industry, the pharmaceutical industry, has not taken the problem very seriously. I wish you luck on this miserable journey, but don’t expect much help from physicians.

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@lorirenee1

@ EVERYONE I am so utterly confused who is talking to whom, here, that I just wanna send love to you all. I am one of the curly haired cuties. My husband is the other!!! Lori Renee

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Lori Renee, yes you are a curly top cutie! You're the bestest ever! Huge Warm hugs, Sunny @bustrbrwn22 @jesfactsmon

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