COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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@kathleen123

I have (small fiber) non-length dependent neuropathy. I had my first Pfizer Covid-19 vaccination 2 1/2 weeks ago. It exacerbated my neuropathy symptoms. I’m scheduled for my 2nd shot on Wednesday but I don’t know whether to get it since the 2nd shot is much more likely than the first to have significant adverse effects. I called Pfizer and they claim that Covid-19 vaccination is not related to any neurological side effects although I have read elsewhere it can exacerbate PN. My internist says there is just no data to know whether the 2nd shot is likely to make my symptoms worse.

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Good evening @kathleen123, I just noticed your inquiry and wanted to respond. I have Small Fiber Neuropathy with a considerable level of pain…..controlled by medical cannabis. I also am in the throws of Neuropathic Itch which is overwhelming at times. Because of these conditions, I talked to my clinicians and they indicated that I should proceed with the Pfizer vaccine doses. I had no problem with the first injected dose. Last Tuesday, I had the second dose. Everything seems normal. What are the significant adverse effects that you fear might be associated with the second dose? And, if you can…please share what you mean by "exacerbated".

What I was told was not to wait. I think you do need to take the second dose within a certain time for it to be effective? These things are hard to predict when there has not been time to follow up with everyone.

May you be content and at ease.
Chris

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Hi. I have a history of nueropathy that was dormant the last few years. the pfizer vaccine brought it back the next day. it went away after a week from the first shot, but like an idiot i went for the 2nd shot and it came back even worse,11 days out and its constant burning and itching.

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Has your dr offered any explanation for this?Did u receive any treatment for this? Was your reaction reported to VAERS?

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@joeyd5641

Hi. I have a history of nueropathy that was dormant the last few years. the pfizer vaccine brought it back the next day. it went away after a week from the first shot, but like an idiot i went for the 2nd shot and it came back even worse,11 days out and its constant burning and itching.

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Hi @joeyd5641, Welcome to Connect. I have idiopathic small fiber peripheral neuropathy but only have numbness in the feet and part of the legs for symptoms. I've never heard of neuropathy going dormant. Mostly it just keeps getting worse unless they find the cause of the pinched or damaged nerves and are able to correct/fix it. I'm sorry you are having an adverse reaction to the 2nd COVID shot.

Are you able to share a little more about your neuropathy diagnosis and how or when it was diagnosed?

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By exacerbate I mean I had very little neuropathic problems in my arms until after the 1st shot when I developed burning, pins and needles, coldness and weakness in my arms. On a scale of 1-10 I’d say it went from a 1 or 2 to about a 5 or 6. It’s been 3 weeks and it hasn’t gone away. I’m going to go ahead and get the second shot on Tuesday.

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@kathleen123

By exacerbate I mean I had very little neuropathic problems in my arms until after the 1st shot when I developed burning, pins and needles, coldness and weakness in my arms. On a scale of 1-10 I’d say it went from a 1 or 2 to about a 5 or 6. It’s been 3 weeks and it hasn’t gone away. I’m going to go ahead and get the second shot on Tuesday.

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Thanks for your response. So the vaccine shot ramped up the neuropathy symptoms beyond what they were before the injection.. No migraines or digestive issues? Were you able to file a record of your Side effects with the vaccine staff?

Have you informed your PCP or another clinician so that your response is in your chart?
Let me know how the second shot goes on Tuesday. My second shot was easier than the first one.

Be safe and protected.
Chris

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@kathleen123

By exacerbate I mean I had very little neuropathic problems in my arms until after the 1st shot when I developed burning, pins and needles, coldness and weakness in my arms. On a scale of 1-10 I’d say it went from a 1 or 2 to about a 5 or 6. It’s been 3 weeks and it hasn’t gone away. I’m going to go ahead and get the second shot on Tuesday.

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No way should you get the second shot if the first one did that. They are saying the first one is now good enough for a good while at least. The second one destroyed my neuropathy. Why would you do the second one?

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@kathleen123

By exacerbate I mean I had very little neuropathic problems in my arms until after the 1st shot when I developed burning, pins and needles, coldness and weakness in my arms. On a scale of 1-10 I’d say it went from a 1 or 2 to about a 5 or 6. It’s been 3 weeks and it hasn’t gone away. I’m going to go ahead and get the second shot on Tuesday.

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Kathleen, I am so sorry to hear this happened to you! I 'm glad you're going to get your 2nd dose. They just bumped my 2nd dose from tomorrow until the 28th. I'm bummed bc they say you won't be fully immune until 14+ days after and I am missing my family so much!!

I will be praying that you won't get any side effects at all and that it doesn't exacerbate any existing problems. Keep us posted ok?

Warmest wishes, Sunnyflower

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@artscaping

Thanks for your response. So the vaccine shot ramped up the neuropathy symptoms beyond what they were before the injection.. No migraines or digestive issues? Were you able to file a record of your Side effects with the vaccine staff?

Have you informed your PCP or another clinician so that your response is in your chart?
Let me know how the second shot goes on Tuesday. My second shot was easier than the first one.

Be safe and protected.
Chris

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Hello, Chris. I've missed you and your fun, helpful, thoughtful input in my life. What vaccine did you get? What were your reactions with the first shot? hope you're doing well, itch is controlled….ever determine the cause? enjoy and stay warm! Blessings to you. elizabeth

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@joeyd5641

No way should you get the second shot if the first one did that. They are saying the first one is now good enough for a good while at least. The second one destroyed my neuropathy. Why would you do the second one?

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Hi, I got the following info from the technologyreview.com website. It is a description of what is in the Pfizer vaccine and what the implications of these ingredients are, which might be interesting to those people experiencing negative side effects.

link to entire article: https://www.technologyreview.com/2020/12/09/1013538/what-are-the-ingredients-of-pfizers-covid-19-vaccine/

Below I have copied the more interesting and relevant parts of the article. Best, Hank

——————————————————————————————————————————————————————————–
Pfizer’s vaccine is the first on the market that consists of actual genetic information from a virus in the form of messenger RNA, or mRNA, a type of molecule whose usual job is to transport copies of genetic instructions around a cell to guide the assembly of proteins. Imagine an mRNA as a long ticker tape carrying instructions. It's fairly delicate stuff, and that's why Pfizer's vaccine needs to be kept at around -100 °F (-73 °C) until it's used.

The new vaccine, delivered as a shot in the arm muscle, contains an RNA sequence taken from the virus itself; it causes cells to manufacture the big “spike” protein of the coronavirus, which the pathogen uses to glom onto a person’s cells and gain entry. On its own, without the rest of the virus, the spike is pretty harmless. But your body still reacts to it. This is what leaves you immunized and ready to repel the real virus if it turns up.

The mRNA in the vaccine, to be sure, isn’t quite the same as the stuff in your body. That’s good, because a cell is full of defenses ready to chop up RNA, especially any that doesn’t belong there. To avoid that, what’s known as “modified nucleosides” have been substituted for some of the mRNA building blocks.

But Pfizer is holding back a little. The spike gene sequence can be tweaked in small ways for better performance, by means that include swapping letters. We don’t think Pfizer has said exactly what sequence it is using, or what modified nucleosides. That means the content of the shot may not be 100% public.

The lipids
The Pfizer vaccine, like one from Moderna, uses lipid nanoparticles to encase the RNA. The nanoparticles are, basically, tiny greasy spheres that protect the mRNA and help it slide inside cells.

These particles are probably around 100 nanometers across. Curiously, that’s about the same size as the coronavirus itself.

Pfizer says it uses four different lipids in a “defined ratio.” The lipid ALC-0315 is the primary ingredient in the formulation. That’s because it’s ionizable—it can be given a positive charge, and since the RNA has a negative one, they stick together. It's also a component that can cause side-effects or allergic reactions. The other lipids, one of which is the familiar molecule cholesterol, are “helpers” that give structural integrity to the nanoparticles or stop them from clumping. During manufacturing, the RNA and the lipids are stirred into a bubbly mix to form what the FDA describes as a “white to off-white” frozen liquid.

Salts
The Pfizer vaccine contains four salts, one of which is ordinary table salt. Together, these salts are better known as phosphate-buffered saline, or PBS, a very common ingredient that keeps the pH, or acidity, of the vaccine close to that of a person’s body. You’ll understand how important that is if you’ve ever squeezed lemon juice on a cut. Substances with the wrong acidity can injure cells or get quickly degraded.

Sugar
The vaccine includes plain old sugar, also called sucrose. It’s acting here as a cryoprotectant to safeguard the nanoparticles when they’re frozen and stop them from sticking together.

Saline solution
Before injection, the vaccine is mixed with water containing sodium chloride, or ordinary salt, just as many intravenously delivered drugs are. Again, the idea is that the injection should more or less match the salt content of the blood.

No preservatives
Pfizer makes a point of saying its mixture of lipid nanoparticles and mRNA is “preservative-free.” That’s because a preservative that’s been used in other vaccines, thimerosal (which contains mercury and is there to kill any bacteria that might contaminate a vial), has been at the center of worries around over whether vaccines cause autism. The US Centers for Disease Control says thimerosal is safe; despite that, its use is being phased out. There is no thimerosal—or any other preservative—in the Pfizer vaccine. No microchips, either.

The vaccine is still known by the code name BNT162b, but once it’s authorized, expect Pfizer to give it a new, commercial name that conveys something about what’s in it and what it promises for the world.

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