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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@pfbacon

Yes. I had chicken pox, and I have sensory axonal Neuropathy in the advanced stages. Peggy

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Hi Peggy, I had to look up sensory axonal neuropathy. I am heart sick to know you suffer this!! The definition says there is a "prolonged" recovery period so does that mean that you will eventually recover? I REALLY pray so! I will ask the Lord to expedite your recovery and to give you His comfort, and peace that surpasses human understanding through Christ. Please know that I will be thinking of you. Warmest hugs, Sunnyflower 🤗🙏

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@lorirenee1

@dont Hi, Just wanted you to be aware that 900 mg. of Gabapentin daily is still not the maximum daily dose of Gabapentin. If the stuff is helping you, and your feel like you need even more than 900 mg., talk to your Doc. I am not at all familiar with the RST SANEXES, but best of luck!!! Lori Renee

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@dont yes, this is true, there are many patients who take over 3000 mg believe it or not! The key is usually to take the medication at three different times in a day. But always check with your doctor first! Many blessings, Sunny flower PS: I get relief from Gabapentin but have horrible side effects which I hate! And I am at a very sub-therapeutic dose compared to many people at only 6 to 800 mg per day total.

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My first day on just 300mg of Gabapentin went well. Second day was bad, especially in the evening when I experienced burning of my FACE for first time!! !! Very frighting, accompanied with a strange odor. Needless to say, I started a second 300mg dose today today at 9:00am. (9:00am and 9:00pm) So far at 1:15pm doing better, but still feel minor burning of legs and a hint of it in my face. I had my blood drawn this morning for 5 tests: 1. Protein Electrophoresis Serum with Reflex to Immun 2. Sedimentation Rate 3. ANA 4. Heavy Metal Screen-ARUP 5. Motor Sensory Neuropathy Evaluation-ARUP. I appreciate everyone's comments.

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@sunnyflower

@dont yes, this is true, there are many patients who take over 3000 mg believe it or not! The key is usually to take the medication at three different times in a day. But always check with your doctor first! Many blessings, Sunny flower PS: I get relief from Gabapentin but have horrible side effects which I hate! And I am at a very sub-therapeutic dose compared to many people at only 6 to 800 mg per day total.

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Everyone reacts differently to gabapentin; I was originally prescribed 100 mg. 3xday but I couldn’t remember anything after 1 day so I cut back to 1x at bedtime and after almost 3 yrs. have increased it 2 times, now take 300 mg. at bed (sometimes 400 if having a flare) and I am good for 24 hrs. I read somewhere that less is more with gabapentin and that has been true for me. It seems like most drs. like to start off prescribing a regimen of 3xday when it may not be necessary. I have noticed my neuropathy has worsened over the last few months but I prefer not to increase my dosage because of the memory problems. Helen

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@helennicola

Everyone reacts differently to gabapentin; I was originally prescribed 100 mg. 3xday but I couldn’t remember anything after 1 day so I cut back to 1x at bedtime and after almost 3 yrs. have increased it 2 times, now take 300 mg. at bed (sometimes 400 if having a flare) and I am good for 24 hrs. I read somewhere that less is more with gabapentin and that has been true for me. It seems like most drs. like to start off prescribing a regimen of 3xday when it may not be necessary. I have noticed my neuropathy has worsened over the last few months but I prefer not to increase my dosage because of the memory problems. Helen

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@helencola Im the same way with gabapentin I only take 300 at night or four if needed . Dr has me on 200 in morning I was totally out yesterday hence I exploded with nerve pain ended up taking my Tramadol. I have noticed my balance is off at times when on it . Have you had any of these problems

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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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lioness, I think my flare ups are mostly due to stress. I have some slight balance problems but think that is due to an ongoing hip problem. I have constant vision blurriness which I attribute to dry eye from the gabapentin, which clears when I blink or use eye drops. I have had other side effects which went away after a while. Helen

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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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What in your background as a dentist gives you the ability to find "truth"... in the questions your list? Do you have connections with clinical trials of some of the issues or medications..? What is your methodology in finding the answers?

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@ken82

What in your background as a dentist gives you the ability to find "truth"... in the questions your list? Do you have connections with clinical trials of some of the issues or medications..? What is your methodology in finding the answers?

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I will search for scientific evidence and seek out professionals who specialize or have interests in these issues. Hopefully someone will do a study about Shingrix post vaccination small fiber neuropathy. I have already found a neurologist in Chicago who is aware of this being reported. Four years of dental school includes biochemistry, histology & embryology, general anatomy, neuroanatomy, epidemiology & biometry, microbiology, pharmacology, physiology, pathology, internal medicine, pathology, therapeutics, and public health in addition to all of the dental specific courses and labs. Many dental schools have changed the degree from DDS ( doctor of dental surgery) to DMD ( doctor of dental medicine) to reflect the medical education of general dentists.

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