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COVID vaccines and neuropathy

Neuropathy | Last Active: Nov 7 12:50pm | Replies (2237)

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@sandiaschild

I got my second dose of Moderna 2 days ago and am still in agony. I wish that I had not done it. After the first shot I felt bad for 3-4 days, but had no neuropathy symptoms... now my paws are on fire. The worst being my hands because I type/talk for a living while sitting. I have 2 autoimmune diseases and MCAS and haven't had neuropathy symptoms in 8 years... about a year and a half after they discovered the celiac disease and I stopped eaten gluten and certain other allergens... back then it was so bad, I needed OT and PT because my hands were so weak I could not sign my name or chop vegetables. I ended up with a bunch of adaptive equipment which made my life a little easier but didn't address the pain, which eventually faded as my gut healed and I gained weight. Now I feel like I've been set back 10 years. Typing this is extremely painful, but I want others to know what they could be in for. I had COVID-19 in December, and lost my sense of taste on the left side of my tongue but was not hospitalized, did I even need the second Moderna vaccine? Or the first? How come doctors cannot give more appropriate, tailored advice? Medical care in this country is embarrassingly bad compared to other first world countries.

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Replies to "I got my second dose of Moderna 2 days ago and am still in agony. I..."

Hello @sandiaschild, Welcome to Mayo Clinic Connect. I'm sorry to hear of your adverse reactions to the Moderna vaccine. I know you are not alone. A lot of members have reported adverse side effects. Hoping it's only temporary. I suspect doctors can only give an educated guess based on the patients condition and the benefits of the vaccine vs the risks of getting COVID-19.

Have you reported the side effects using VAERS or V-Safe?
-- https://vaers.hhs.gov/
-- https://www.cdc.gov/coronavirus/2019-ncov/vaccines/safety/vsafe.html

Please let us know how you are doing over the next few days. I think we will see over time that these flares are the immune system going into "overdrive" in reaction to the vaccines, and it will resolve on its own, or with medication. According to infectious disease docs, the vaccine and its side effects are still better than the Covid infection.

I reacted to both the quadravalent flu vaccine last fall and the Pfizer vaccine with inflammatory flares. The flare with the flu vaccine was far worse, and ended with needing steroid injections.
The effects of the Pfizer vaccine began in earnest after the second dose, peaked at 3 weeks, and have since faded to a background annoyance.

It is important to keep in mind that even though you are reading about a lot if flares here on Connect, that does not mean it is necessarily happening a lot - I looked through VAERS data earlier this week, and it appears that about 10,000 people (.01% of the 100,000,000 fully vaccinated) are reporting neuropathy symptoms after Covid vaccines - most were transient, "pins and needles" that subsided quickly.
Compare this to people with a serious Covid infection who get neuropathy. 33,000,000 people have gotten Covid in the US and 9% (3,000,000) have been sick enough to be hospitalized. Of those seriously ill, 28% have neuropathy symptoms after recovery (about 890,000.) If you have an underlying condition, your chance of being among the hospitalized group rises to anywhere from 25 - 40%, and your chance of serious complications or an ICU stay also rises.

So here is a comparison to think about - if you get Covid, your chances of developing or worsening neuropathy are probably 250 times greater than getting it from the vaccine. That doesn't even take into consideration all the other awful effects of Covid - pneumonia, blood clots, death...

So your decision to have the vaccine was probably a wise one, even though it seems hard to believe when you feel so bad.
Sue