1. < Neuropathy

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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bustrbrwn22 | @bustrbrwn22 | Oct 7, 2020
In reply to @magnum52 "Gabapentin works for very few people. It’s basically an anti-seizure drug. I assume you had a..." + (show)
@magnum52

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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@magnum52 I have tried all of those and they did not help depression, anxiety, or pain some with scared side effects. Can’t we just have what works prescribed instead of trying anything else BUT benzo’s or pain meds?

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pfbacon | @pfbacon | Oct 7, 2020

I got the super dooper flu shot today "for seniors". My arm is a little sore, that's all so far. I will get shingrix #1 in a week. Peggy

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1 reply
Hank | @jesfactsmon | Oct 8, 2020
In reply to @jesfactsmon "@erikas Erika, I would weigh how helpful he is in all different ways and if he..." + (show)
@jesfactsmon

@erikas
Erika, I would weigh how helpful he is in all different ways and if he is not just downright terrific in every way other than this "bedside manner" problem whereby he seems impatient to answer questions, I'd seek another doctor. My wife and I have the same pcp. We never waste his time, we understand he has other patients. But we do ask relevant and pertinent questions as they come up. When we have one we submit it to him through the patient portal online. He ALWAYS responds within 24 hours, often much less, with a thoughtful answer. He is very open to any suggestions we may have about our health issues and he often has good ideas of his own. If you decide to stay with your doctor, try to push him to answer ALL of you questions, that is part of his job. Best, Hank

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@erikas
Hi Erika, you came up in a conversation with Linda (my wife) about your statement that your doctor makes you feel like he does not have time for your questions. One thing that Linda said was that the first thing you should do before you go in to see your doctor is think of any questions you want to ask. Then write them down on a piece of paper, making them as succinct and to the point as possible. Take the list to the appt. Then, as soon as your doctor comes into the exam room, before he starts discussing anything with you, tell him "I have some questions" and whip out your list and fire away. Don't wait until he feels like he's done with you to ask your questions, do it right up front.

Now as far as questions that occur to you during the course of you appointment, there is where you just have to push to get those answered as well. But at least the list might address anything you thought of before going in. Linda thought this might be helpful to you and asked me to pass it along. Best to you, Hank

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bustrbrwn22 | @bustrbrwn22 | Oct 8, 2020
In reply to @pfbacon "I got the super dooper flu shot today "for seniors". My arm is a little sore,..." + (show)
@pfbacon

I got the super dooper flu shot today "for seniors". My arm is a little sore, that's all so far. I will get shingrix #1 in a week. Peggy

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@pfbacon thanks for sharing. Did you ever have chicken pox? Do you currently have any neuropathies? Please keep us posted.

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pfbacon | @pfbacon | Oct 8, 2020

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

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1 reply
DonT | @dont | Oct 8, 2020

Here is my current update of my SFN. Yesterday was my first morning after taking 300mg Gabapentin at 9:00pm the night before. I had a very good day with little symptoms. I did experience some dizziness which progressively went away. I took another 300mg last night and today at 10:00am I am feeling more burning than yesterday. I was instructed to try 2-3 days at just nightly, if needed take another 300mg in the morning for another 2-3 days, and its needed add a 3rd dose spread out, but no more than the 900mg per day. We shall see. I have been advised by others to consider seeing a Naturopathic doctor. Has anyone done this? I would like to treat the causes which are damaged blood vessels. Also I have discovered another possible treatment called RST SANEXES, which is FDA approved (unlike supplements) and covered by medicare and insurance. It uses cell signaling to optimize the energy between cells and opens up the blood vessels. There is a chiropractor, John Harper DC, in Oceanside who has this treatment. Has anyone heard of this or tried it?? You can look at his website. Don

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2 replies
sunnyflower | @sunnyflower | Oct 8, 2020
In reply to @dont "I had recently reported here my case of burning feet and legs about a month after..." + (show)
@dont

I had recently reported here my case of burning feet and legs about a month after receiving the 2nd Shingrix injection.. I did not previously disclose that I have already had Shingles twice. Once when I was 27 and again when I was 59. I am now 69. I will be seeing a neurologist on Tuesday morning and report back.

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DonT, I am really surprised and so sorry that you've had shingles twice!! Wow, that's really tough! Was it pretty rough and, how long did both cases last? I am interested to hear what the neurologist says about your symptoms, and if he/she thinks there is any connection to Shingrix vaccine. Take good care of yourself, Sunnyflower

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sunnyflower | @sunnyflower | Oct 8, 2020
In reply to @dont "I have an update on my status today after consulting with the Neurologist. I do have..." + (show)
@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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Hi Don, wow, I 've never heard of Small Fiber "Mediated Painful" Neuropathy. Hope your lab tests come back as normal and that you experience relief from the Gabapentin. Keep us posted, Sunnyflower

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Erika | @erikas | Oct 9, 2020
In reply to @dont "Here is my current update of my SFN. Yesterday was my first morning after taking 300mg..." + (show)
@dont

Here is my current update of my SFN. Yesterday was my first morning after taking 300mg Gabapentin at 9:00pm the night before. I had a very good day with little symptoms. I did experience some dizziness which progressively went away. I took another 300mg last night and today at 10:00am I am feeling more burning than yesterday. I was instructed to try 2-3 days at just nightly, if needed take another 300mg in the morning for another 2-3 days, and its needed add a 3rd dose spread out, but no more than the 900mg per day. We shall see. I have been advised by others to consider seeing a Naturopathic doctor. Has anyone done this? I would like to treat the causes which are damaged blood vessels. Also I have discovered another possible treatment called RST SANEXES, which is FDA approved (unlike supplements) and covered by medicare and insurance. It uses cell signaling to optimize the energy between cells and opens up the blood vessels. There is a chiropractor, John Harper DC, in Oceanside who has this treatment. Has anyone heard of this or tried it?? You can look at his website. Don

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@dont, prompted by @jeffrapp's post questioning the FDA status of Sanexas, I looked into it too. Management of neuropathy symptoms is limited, thus patients turn to alternative treatment in the hope of relief. When considering complementary or alternative treatments, be open-minded yet skeptical.

RST Sanexes is FDA Cleared, but not Approved according to the company's website. This distinction is important.

"1. Clearance: When a medical device is cleared, this means it has undergone a 510(k) submission, which FDA has reviewed and provided clearance.
2. Approval: For Class III medical devices to be legally marketed they must undergo a rigorous review and approval process. Following a successful submission of a premarket approval (PMA) or a Humanitarian Device Exemption (HDE), the device is given Approval by FDA.

3. Granted: Medical devices using the De Novo pathway must be Granted by FDA before they can be legally marketed in the United States. This is a relatively new term in the FDA lexicon."

You can read more here:

- How FDA Distinguishes Between Clearance vs. Approval vs. Granted https://www.greenlight.guru/blog/fda-clearance-approval-granted

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lorirenee1 | @lorirenee1 | Oct 9, 2020
In reply to @dont "Here is my current update of my SFN. Yesterday was my first morning after taking 300mg..." + (show)
@dont

Here is my current update of my SFN. Yesterday was my first morning after taking 300mg Gabapentin at 9:00pm the night before. I had a very good day with little symptoms. I did experience some dizziness which progressively went away. I took another 300mg last night and today at 10:00am I am feeling more burning than yesterday. I was instructed to try 2-3 days at just nightly, if needed take another 300mg in the morning for another 2-3 days, and its needed add a 3rd dose spread out, but no more than the 900mg per day. We shall see. I have been advised by others to consider seeing a Naturopathic doctor. Has anyone done this? I would like to treat the causes which are damaged blood vessels. Also I have discovered another possible treatment called RST SANEXES, which is FDA approved (unlike supplements) and covered by medicare and insurance. It uses cell signaling to optimize the energy between cells and opens up the blood vessels. There is a chiropractor, John Harper DC, in Oceanside who has this treatment. Has anyone heard of this or tried it?? You can look at his website. Don

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@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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