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?

Interested in more discussions like this? Go to the Neuropathy Support Group.

@dont

I am now focused on the component of the Shingrix vaccine which may be responsible for developing my Small Fiber Neuropathy. The Medicinal ingredients are: "1 dose (0.5 mL) contains 50 micrograms of glycoprotein E (gE) powder mixed with AS01B adjuvant suspension. gE is a protein found in the Varicella Zoster Virus. This protein is not infectious." "Non-medicinal ingredients: Cholesterol, dipotassium phosphate, dioleoyl phosphatidylcholine, disodium phosphate anhydrous, polysorbate 80, potassium dihydrogen phosphate, sodium chloride, sodium dihydrogen phosphate dihydrate, sucrose and water for injections."

I believe the culprit is the Adjuvant. "There are several possible pathophysiologic mechanisms that may explain vaccine-associated polyneuropathies including including immune-mediated hypersensitivity to the adjuvants or solvents in the vaccine, as well as nervous system invasion caused by prolonged, less virulent, viral infection." "The adjuvant is made of 50 micrograms each of a plant extract (Quillaja saponaria Molina, fraction 21 (QS-21)) and a bacterial extract (3-O-desacyl-4’- monophosphoryl lipid A (MPL)) and is used to improve your body’s response to the vaccine." This is reported to be a very powerful adjuvant.

My questions are: 1. How long does this adjuvant stay active in the body? 2. Can it be neutralized? 3. What is the mechanism causing the neuropathy?
4. What component in the adjuvant is the source of the problem?

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@dont Don, we need really educated people like you to do the intense research that is needed to study Neuropathy and the Shingles Vaccine. I did hear from someone some years ago about developing Neuropathy after being vaccinated for Shingles. Please do keep us informed of your discoveries. I see a Class Action Suit in the making. I really do, not that it will help you to feel well, but perhaps, justice will be served. Please keep us all informed of your discoveries. Lori Renee

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@lorirenee1

@dont Don, we need really educated people like you to do the intense research that is needed to study Neuropathy and the Shingles Vaccine. I did hear from someone some years ago about developing Neuropathy after being vaccinated for Shingles. Please do keep us informed of your discoveries. I see a Class Action Suit in the making. I really do, not that it will help you to feel well, but perhaps, justice will be served. Please keep us all informed of your discoveries. Lori Renee

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My current thoughts are that the incidence of people who develop SFN from Shingrix is very low compared to the incidence of getting shingles with postherpetic neuralgia that even if it is listed as a potential side effect, it would be best to receive the vaccine. Of course, it would be ideal to identify the "allergen" in the vaccine and screen people for it BEFORE vaccination.

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I want to know how Joannerhodes is doing. Don

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@dont

I want to know how Joannerhodes is doing. Don

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Hi @dont, I see that you're hoping to hear from fellow member @joannerhodes. I've tagged her in this discussion using the @ symbol. If she has her notifications set to receive emails when mentioned, she'll get this message.

In the meantime, Don, it's been a while since you've posted. How are you doing?

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@colleenyoung

Hi @dont, I see that you're hoping to hear from fellow member @joannerhodes. I've tagged her in this discussion using the @ symbol. If she has her notifications set to receive emails when mentioned, she'll get this message.

In the meantime, Don, it's been a while since you've posted. How are you doing?

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I’m good...the neuropathy lasted a few days, thankfully! Def better than getting shingles😊

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@colleenyoung

Here are some relevant discussion regarding neuropathy medications and gabapentin.
- Neuropathy Medications https://connect.mayoclinic.org/discussion/neuropathy-medications/
- Neuropathy: Anyone have any experience with gabapentin? https://connect.mayoclinic.org/discussion/neuropathy-13/

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I thought this discussion was about Shingrix ... I could be wrong of course ... Peggy

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@colleenyoung

Hi @dont, I see that you're hoping to hear from fellow member @joannerhodes. I've tagged her in this discussion using the @ symbol. If she has her notifications set to receive emails when mentioned, she'll get this message.

In the meantime, Don, it's been a while since you've posted. How are you doing?

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Hi Colleen, thanks for the info. My symptoms are fortunately stable with 1800mg of Gabapentin per day. I just hope and pray that it will stay that way or improve. I have been unsuccessful so far in trying to find anyone who would be interested in investigating/researching my unusual adverse reaction to the Shingrix vaccine. I did hear briefly from both GSK and VAERS. I found an expert on Neuropathies, but he had no research on post vaccine incidences either: Alan Pestronk, M.D. at Washington University at St. Louis. He has a great website with great information. I will be in a discussion tomorrow with a law firm regarding a class action lawsuit. If there is anyone here who may be interested in being part of a class action lawsuit, let me know. Don

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Please give it some thought before you start a class action lawsuit, Don. For one thing, you won't get any money - companies always settle with the lawyers and pay them - the plaintiffs get something useless like: a coupon for $3 off on your next shingrix vaccination. Second, if your lawsuit gets media attention, politicians will jump on the bandwagon and make a law banning the shingrix vaccination so they can tell voters "look at me, I'm saving you from this terrible thing". A vaccination against shingles is wonderful - it saves many people from years of horrible relentless pain. If you find out that you are one of the few who had a bad reaction, you might want to be kind and let the other folks who need the vaccination have it.

Don't take my word for it, do some research into the results of class action lawsuits, please, before you decide to launch it.

P.S. Threatening to start a class action lawsuit might get good results - we all like to avoid paying lawyers and getting bad publicity if we can.

Peggy

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@pfbacon

Please give it some thought before you start a class action lawsuit, Don. For one thing, you won't get any money - companies always settle with the lawyers and pay them - the plaintiffs get something useless like: a coupon for $3 off on your next shingrix vaccination. Second, if your lawsuit gets media attention, politicians will jump on the bandwagon and make a law banning the shingrix vaccination so they can tell voters "look at me, I'm saving you from this terrible thing". A vaccination against shingles is wonderful - it saves many people from years of horrible relentless pain. If you find out that you are one of the few who had a bad reaction, you might want to be kind and let the other folks who need the vaccination have it.

Don't take my word for it, do some research into the results of class action lawsuits, please, before you decide to launch it.

P.S. Threatening to start a class action lawsuit might get good results - we all like to avoid paying lawyers and getting bad publicity if we can.

Peggy

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Hi Peggy, thank you for your thoughts. I really want to see some ownership/responsibility by GSK for lack of a warning regarding the potential adverse reaction of neuropathy. The adjuvant is very powerful and it barely got approved by the company in a 5:4 vote. They had concerns about some of these more serious reactions. The class action lawsuit has already been initiated by others and I just am considering joining it. Don

Clay Chapman Iwamura Pulice & Nervell
Attorneys at Law, A Law Corporation
700 Bishop Street, Suite #2100, Honolulu, HI 96813

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@dont

Hi Peggy, thank you for your thoughts. I really want to see some ownership/responsibility by GSK for lack of a warning regarding the potential adverse reaction of neuropathy. The adjuvant is very powerful and it barely got approved by the company in a 5:4 vote. They had concerns about some of these more serious reactions. The class action lawsuit has already been initiated by others and I just am considering joining it. Don

Clay Chapman Iwamura Pulice & Nervell
Attorneys at Law, A Law Corporation
700 Bishop Street, Suite #2100, Honolulu, HI 96813

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DonT, I wonder if the timing would negatively impact a successful lawsuit outcome considering the possibility of it somewhat setting a precedent with regard to the COVD19 vaccines coming out shortly; there are bound to be some serious side effects with those, even if only a small number. Just a thought. Helen

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