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Neuropathy Reactivated by COVID Booster

vlh
vlh Member Posts: 768

Has anyone else had an issue with their stable peripheral neuropathy unexpectedly worsening after a COVID vaccination? I'm a big advocate of vaccines and had no issues with my first two Moderna shots beyond minor arm soreness and some fatigue for a couple of days. I was surprised when I developed significant neuropathy issues in my arm and hand 11 1/2 hours after my booster shot. It's been 5 years since I had my last chemo infusion.

Although the most noticeable symptoms have improved greatly the past few months, the numbness in my fingertips has lingered at a level greater than prior to the vax. It's only an annoyance, but my research hasn't disclosed many people experiencing this particular issue so thought I would ask here. (NOTE: I do NOT want to provoke an anti-vax tirade. If you don't have pertinent information to share specifically about worsening neuropathy after a vax, please refrain from commenting. Thanks in advance.)

Lyn


Comments

  • nipab
    nipab Member Posts: 46
    edited April 2022

    It should not be related to chemo taken years before. But it is very new, and no one will know if chemo causes this. It is better to let your oncologist and PCP decide. let them both know, they should be reading new medical journals and will know something.

  • vlh
    vlh Member Posts: 768
    edited April 2022

    Thank you for your input, nipab. I've already advised my PCP, but will mention it at my next oncology appointment.

    Lyn

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited April 2022

    I didn't have worsening neuropathy, but I had a skin rash get much worse after my first Moderna shot. My MO and I think it was due to a combination of my existing rash, being on Ibrance, and getting the vaccine. I timed my second Moderna shot after the rash was mostly healed and with a break in Ibrance. I needed my prescription ointments to keep the rash down, and it didn't spread. I got the Pfizer booster during another Ibrance break and had no problems. I'm planning on getting Pfizer as a second booster during my next Ibrance break.

    I hope your neuropathy lessens soon.

  • vlh
    vlh Member Posts: 768
    edited April 2022

    Interesting, SerenityStat. I'm glad the booster didn't further aggravate the rash and hope the 2nd Booster will be uneventful

    Lyn

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited April 2022

    My charge nurse said that dermatology would find me interesting, and they did. ☹️

    I forgot to mention that all of my shots were in my thigh opposite of my LE arm. After reading that the vaccinations could inflame lymph nodes, I wanted to minimize the risk of increased LE. My rash hit 3 limbs, my face, and my neck, but didn't affect my LE arm at all. I recommend any further boosters away from your neuropathy sites if possible.

  • lillyishere
    lillyishere Member Posts: 770
    edited April 2022

    vlh, I am glad you opened this topic. I thought I was the crazy one who complained about neuropathy after vaccines. After the first one, I had neuropathy in my hands and feet. Hands improved but neuropathy of the feet got worst after the second vaccine. Also, I couldn't leave the room or drive for a couple of days because I was very dizzy after the second vaccine. I had no other symptoms. My feet are still numb and it is difficult to walk. I am a yogi and walk/ run for miles and this is making my life difficult. I told my PCP and MO but they did not say anything. Please let me know if you find out anything.

    I also want to mention I never had chemo or radiation so neuropathy is new to me.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited April 2022

    I had peripheral neuropathy from chemo for a few months. I added magnesium, vitamin B6, vitamin B12, and Claritin. Maybe try a supplement?

    ETA - My experience with the vaccine is that it exacerbated what I already had. With all the meds we take, it could trigger a side effect that wasn’t occurring. The peripheral neuropathy can be due to depleted nutrients like what I experienced during chemo.

  • lillyishere
    lillyishere Member Posts: 770
    edited April 2022

    serenitystat, thank you. I already take multivitamins, magnesium, calcium, and fish oil. Did you ask your doctor to do a blood test to check on the vitamin levels? Why can this happen after the vaccine?

  • quietgirl
    quietgirl Member Posts: 165
    edited April 2022

    if you do a quick Google search there are a couple of cases studies on folks who had similar neuropathy side effects from the vaccine (not huge numbers but small case studies). I know that doesn’t actually help you much to know that but there are definitely medical reports supporting the connection. Rare yes but still if it’s been a side effect for individuals with out prior neuropathy it seems a likely explanation

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited April 2022

    lillyishere,

    I've had neuropathy that was induced by chemo (CIPN all gone) and neuropathy due to sciatica (small spot remains). Somehow I managed not to get it from vaccinations.

    I wasn't checked for vitamin deficiencies during chemo. Neuropathy is a common side effect when the medication depletes vitamin B12. I stopped the B vitamins when the CIPN stopped. I still take magnesium and switched to Aerius for my antihistamine.

    Could the vaccine cause PN? Possibly with the right combination of variables like what I had with the skin rash. It wasn't due to the vaccine alone. As quietgirl found, it's a rare occurrence.

    I can say what worked for me when I had neuropathy. For CIPN, supplements and antihistamine helped. For neuropathy from sciatica, I had to work to release the nerve impingement and the neuropathy improved. This involved meds, postural alignment exercises, and nerve flossing.

    I hope your neuropathy improves.

  • formydaughter
    formydaughter Member Posts: 121
    edited May 2022

    happened to me too with the booster. 10 days after. I haven’t had much neuropathy in years (I’m 8.5 years out from dx.). Originally with carbo and taxanes it had been much worse and gradually tapered over time to become a smaller issue that prevented stilettos (lol) but manageable. The booster spiked it. I’m also having it in my hands for first time - had only been feet before. Had an EMG at my neurologist which showed no new cause for the neuropathy. My neurologist said there are many unreported cases of the booster impacting migraine uptick but it’s not being data collected. Likely because risk/harm of no vax seen higher. I read a medline study yesterday reporting that they had seen covid patients where the covid had activated dormant stray breast cancer cells in lungs in people 10 yrs after no evidence of disease. Inflammatory markers were high at time of new diagnosis (not surprising with covid), which yields poor prognosis. Lung inflammation was ideal environment for the breast cancer cells to divide/multiply/grow. Result was lung Mets. So all in all, I’ll take the neuropathy from the vax!!

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited May 2022

    Wow! I haven’t seen that report. I do feel the same way in that I’d rather risk side effects from the vaccine than the virus.

  • lillyishere
    lillyishere Member Posts: 770
    edited May 2022

    I am fully vaccinated and tested positive for COVID since Friday. I'm not sure how much the vaccines are helping me but I'm getting the same symptoms as people who have not been vaccinated. So sad because we took the SE of the vaccines for what? Here is the today's news from MedPage https://www.medpagetoday.com/infectiousdisease/covid19/98500?xid=nl_covidupdate_2022-05-02&eun=g1806363d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_050222&utm_term=NL_Gen_Int_Daily_News_Update_active:

    No longer a pandemic of the unvaccinated: data increasingly show that the share of COVID deaths is growing among the vaccinated -- particularly among older and immunocompromised individuals -- who made up 42% of deaths during the Omicron wave, according to a Washington Post analysis.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited May 2022

    Lilly - I'm so sorry you got Covid. It may not seem like it when you've tested positive, but the vaccinations are working. When omicron arrived, Hong Kong has had a huge increase in deaths in their elderly population because of their low vaccination rate.

    Are you eligible for any treatments? I hope you have a full and quick recovery.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited May 2022

    Lilly - I read the linked WP article. The unvaccinated and under vaccinated are most at risk of severe disease and death.

    imageimage

  • lillyishere
    lillyishere Member Posts: 770
    edited May 2022

    Thank you Serenity, I am doing fine. We have been through so much that covid seems like a piece of cake, at least for me, flu-like symptoms and fever that lasted 3 days. I am not taking any treatment but I am nervous about the news that covid can trigger breast cancer cells by reawakening of dormant breast cancer cells. https://breast-cancer-research.biomedcentral.com/articles/10.1186/s13058-020-01360-0

    I don't want to change the direction of this forum since it talks about neuropathy from the vaccine. However, the vaccine doesn't protect us from covid. Can make the symptomps less severe however, it dosn't protect us from not getting covid.

  • SerenitySTAT
    SerenitySTAT Member Posts: 3,534
    edited May 2022

    Glad to hear you’re getting better. The vaccines do reduce the severity of covid, but it is concerning. This is why I continue to mask, distance, and boost as needed. I’m going to post your link in the pandemic thread.

    image

  • vlh
    vlh Member Posts: 768
    edited May 2022

    Thank you for the respectful exchange of information, everyone!

    I know Bell's palsy has been reported after the COVID vax as well as Guillain-Barre syndrome so peripheral neuropathy doesn't seem like a stretch. Still, as noted, it's certainly not a widely reported response. (As an aside, I had Bell's palsy in my late 20s, hadn't had a vaccination in years and no dental work so who knows what caused it?) I'm eligible for a second booster, but am understandably reluctant to get it.


    Lilly, I hope you have a quick recovery and no long-term issues.

    Lyn

  • jons_girl
    jons_girl Member Posts: 444
    edited May 2022

    Thank you all for sharing your experiences here and the article link. I appreciate that information.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,745
    edited May 2022

    Lily,

    I am happy to hear that you’re feeling better. The vaccine was never claimed to be 100% effective in preventing one from contracting Covid. We were never promised that .