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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@sueinmn

@littlenoise and @mcd2021 My doc used 40 mg for 7 days, then 20 mg for 7 days of prednisone. This has been my pattern for years, except minor asthma flares, which are 20 mg for 7 days. According to both primary and pain doc, no "taper" is required for short courses of prednisone (less than a month).

I will take quite a bit of vaccine discomfort over Covid or flu - I have compromised lungs (asthma & bronchiectasis) and inflammatory arthritis - last bout of flu landed me with pneumonia, then a year of bronchitis followed by several other long infections, 18 months of antibiotic therapy which made me very ill, all of which morphed into chronic pain that took another year to get under control...
Sue

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Many thanks for sharing your prednisone dosages. I'm wondering if the course of prednisone that your doctor has prescribed for your inflammatory reactions to vaccines might have been helpful for my symptoms. My doctor gave me a Medrol pack early on which is a much lower, short term, tapered dose. It didn't help at all. I might mention this at my next appointment just to see what he thinks about it. It sounds like you have had some horrible ongoing health issues and I'm glad you are doing better now. I too was willing to accept some vaccine discomfort over Covid - but within reason. I sure wasn't prepared for the significant, long term adverse effects I have been dealing with for four months after just 1 shot. This craziness is way more than I ever expected and I pray it eventually settles down.

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@sdf2000

There's a C-Reactive Protein (CRP) test that you can get from Lab Corp or Quest. There are two versions, regular and High Sensitivity(HS). Regular is more for general inflammation whereas the latter is used more for cardiac inflammation assessment.

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@littlenoise Sedimentation rate blood test can measure inflammation also. I had a normal CRP test result but my sed rate was high/out of range which indicates inflammation. You could ask your doctor to run both tests. I believe you can even order/purchase them yourself if you prefer through Quest and they will send you and your doctor the results.

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@sdf2000

There's a C-Reactive Protein (CRP) test that you can get from Lab Corp or Quest. There are two versions, regular and High Sensitivity(HS). Regular is more for general inflammation whereas the latter is used more for cardiac inflammation assessment.

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Thank you so much! You're a gem!

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@mcd2021

@littlenoise Sedimentation rate blood test can measure inflammation also. I had a normal CRP test result but my sed rate was high/out of range which indicates inflammation. You could ask your doctor to run both tests. I believe you can even order/purchase them yourself if you prefer through Quest and they will send you and your doctor the results.

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Thank you for this information! You're a star!

So sad that I have to do this research to find possible solutions on my own

I'm sorry to admit that both my PCP and Podiatrist are reluctant to admit this could be from the vaccine. They simply shrug, look at me like I may be a conspiracy theorist, and say we just don't know much about the ramifications at this time.

Or maybe I'm projecting because I feel like a conspiracy theorist. It just seems too coincidental.

I talked to a neighbor yesterday. His father, who had recently had a stroke, but was recovering well four at home therapists, his health plummet after his first vaccine. So much so that they bought a new house with a mother-in-law suite, moved. Because of the at home visits with the multiple therapists, his doctor recommended he still get the second dose. His condition worsened and about a month to the day of purchasing the new house, his father passed. No doctor would say that the vaccine was responsible for his decline and/or death.

It's like the medical establishment has signed some secret pact letter to not bad mouth the vaccine. The standard being risk vs reward is tremendous, collateral damage be damned.

Ugh! I do sound like a conspiracy theorist... just not an extreme one that thinks I've been injected with a monitoring device of some sort.

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@mcd2021

@littlenoise Sedimentation rate blood test can measure inflammation also. I had a normal CRP test result but my sed rate was high/out of range which indicates inflammation. You could ask your doctor to run both tests. I believe you can even order/purchase them yourself if you prefer through Quest and they will send you and your doctor the results.

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It is preferable to get your doctor to run the tests if you can. Out of caution, fear of malpractice or for other reasons, most docs will order the same test again, even if you bring a result from an outside lab (except another doc, clinic or hospital.) It can also save time, not waiting on the mail to send sample and get results before seeing the doc.
Sue

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@littlenoise

Thank you for this information! You're a star!

So sad that I have to do this research to find possible solutions on my own

I'm sorry to admit that both my PCP and Podiatrist are reluctant to admit this could be from the vaccine. They simply shrug, look at me like I may be a conspiracy theorist, and say we just don't know much about the ramifications at this time.

Or maybe I'm projecting because I feel like a conspiracy theorist. It just seems too coincidental.

I talked to a neighbor yesterday. His father, who had recently had a stroke, but was recovering well four at home therapists, his health plummet after his first vaccine. So much so that they bought a new house with a mother-in-law suite, moved. Because of the at home visits with the multiple therapists, his doctor recommended he still get the second dose. His condition worsened and about a month to the day of purchasing the new house, his father passed. No doctor would say that the vaccine was responsible for his decline and/or death.

It's like the medical establishment has signed some secret pact letter to not bad mouth the vaccine. The standard being risk vs reward is tremendous, collateral damage be damned.

Ugh! I do sound like a conspiracy theorist... just not an extreme one that thinks I've been injected with a monitoring device of some sort.

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Sorry to hear your doctors are not supportive. My ortho and PCP were both accepting of the possibility that the vaccine caused my reaction. But both took the position that no matter what caused it, we needed to try to fix it and move on. It was reported to VAERS (as was the flu shot reaction before it.)

My daughters both had significant but temporary reactions as well, but found the need to be vaccinated to live their lives (both nurses) a compelling reason to get the second shot, and for one she now has the third (with minimal reaction.)

I hope you continue to improve.
Sue

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@littlenoise

Thank you for this information! You're a star!

So sad that I have to do this research to find possible solutions on my own

I'm sorry to admit that both my PCP and Podiatrist are reluctant to admit this could be from the vaccine. They simply shrug, look at me like I may be a conspiracy theorist, and say we just don't know much about the ramifications at this time.

Or maybe I'm projecting because I feel like a conspiracy theorist. It just seems too coincidental.

I talked to a neighbor yesterday. His father, who had recently had a stroke, but was recovering well four at home therapists, his health plummet after his first vaccine. So much so that they bought a new house with a mother-in-law suite, moved. Because of the at home visits with the multiple therapists, his doctor recommended he still get the second dose. His condition worsened and about a month to the day of purchasing the new house, his father passed. No doctor would say that the vaccine was responsible for his decline and/or death.

It's like the medical establishment has signed some secret pact letter to not bad mouth the vaccine. The standard being risk vs reward is tremendous, collateral damage be damned.

Ugh! I do sound like a conspiracy theorist... just not an extreme one that thinks I've been injected with a monitoring device of some sort.

Jump to this post

I think a lot of doctors just don’t know or want to know if there is a correlation, because in reality there are a relatively small percentage of us having these non-life threatening reactions. And, we definitely need people vaccinated. But, it doesn’t make it right that there are providers who do not take the symptoms seriously. My hope is that research can lead to a Covid vaccine that doesn’t cause such reactions. As a transplant recipient, there is little chance that I and many others are protected even though we’re fully vaccinated.

I have autoimmune disease caused neuropathy, which increased significantly after I was vaccinated. I saw my neurologist shortly after my second shot and he said he wasn’t surprised at my body’s reaction since the vaccine is designed to spark an immune response. So, at least in my case, it triggered Sjogren’s to go even more in hyperdrive and increased my neuropathy symptoms.

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@mcd2021

@littlenoise Sedimentation rate blood test can measure inflammation also. I had a normal CRP test result but my sed rate was high/out of range which indicates inflammation. You could ask your doctor to run both tests. I believe you can even order/purchase them yourself if you prefer through Quest and they will send you and your doctor the results.

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Yep, ESR Test (Erythrocyte Sedimentation Rate)

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@sueinmn

It is preferable to get your doctor to run the tests if you can. Out of caution, fear of malpractice or for other reasons, most docs will order the same test again, even if you bring a result from an outside lab (except another doc, clinic or hospital.) It can also save time, not waiting on the mail to send sample and get results before seeing the doc.
Sue

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Actually, they will usually take labs from lab corp or quest. And these are not home tests. You have to show up at the facility to give blood and/or urine samples. Results are quick, within 24-72 hours, usually.

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@athenalee

I think a lot of doctors just don’t know or want to know if there is a correlation, because in reality there are a relatively small percentage of us having these non-life threatening reactions. And, we definitely need people vaccinated. But, it doesn’t make it right that there are providers who do not take the symptoms seriously. My hope is that research can lead to a Covid vaccine that doesn’t cause such reactions. As a transplant recipient, there is little chance that I and many others are protected even though we’re fully vaccinated.

I have autoimmune disease caused neuropathy, which increased significantly after I was vaccinated. I saw my neurologist shortly after my second shot and he said he wasn’t surprised at my body’s reaction since the vaccine is designed to spark an immune response. So, at least in my case, it triggered Sjogren’s to go even more in hyperdrive and increased my neuropathy symptoms.

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Thank you for joining the discussion. You are correct, side effects like neuropathy (new or increased) are exceedingly rare after vaccine (1533 reports of all types, 435 were mild enough to result in no medical care). That shows reports of new or worse neuropathy in the range of 340/100,000 reports, or .7/100,000 people vaccinated (or .4/100,000 doses). Keep in mind that the report only means the 2 events occurred somewhere around the same time, not that the vaccine was the cause.

Compare that to reported estimates of new or worse neuropathy in the range of 5 - 10% of hospitalized Covid patients (between 120,000 and 250,000) or 350 - 700/100,000 of all Covid patients. So far 11% of the population has had confirmed Covid, about 7% of those have been hospitalized (almost 2.5 million).

If the neuropathy estimates on the low end at 5% are even close, that means over 100,000 people have new or worse neuropathy from 35,000,000 Covid infections compared to the report of 1533 from 350,000,000 doses of the vaccine in 201,000,000 people. That doesn't begin to take into account all the other risks of a Covid infection.

What we read here on Connect and in the media are reports from the minority who have bad reactions to the vaccine, not the majority of the 200,000,000 million plus who were safely and uneventfully vaccinated. Even among the 465,000 VAERS reports, over 300,000 reported events mild enough that they never sought medical care.

These are all things to keep in mind as we decide whether or not to get vaccinated. The fact that individuals have not been infected up to now does not mean they will never get Covid, unless they choose to live in a bubble for the foreseeable future. NOT my personal choice - I am vaccinated, wear a mask, and stay away from crowds. But I can safely interact with the precautions I have chosen to take.

Sue

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