COVID vaccines and neuropathy

Welcome to Mayo Connect. We are a community of people living with a wide variety of conditions and disease, who try to help and support one another on our journeys. We are nomedical professionals, and do not provide medical advice, but we do talk about what does work for us.

Since you did not have any remarkable reaction to the first dose of vaccine, what made you decide to skip the second one?

A great deal of tracking, by CDC and other organizations, has been done on the safety and effectiveness of the vaccine.
Here is the current guidance from GBS-CIDP.org: https://www.gbs-cidp.org/covid-19-vaccines-and-the-gbscidp-community/

This aligns with the guidance most of us have received. Unless there is an extraordinary reason to avoid it, such as an allergy, the protection it provides outweighs any associated risks.
Sue

Welcome to Mayo Connect, we are a community of people living with a wide variety of conditions and diseases who try to share information and help one another along the way. We are not medical professionals and don't give medical advice but we share our successes and failures.

I am sorry to hear that you have reacted to the vaccine with a bout of neuropathy. Some of us have had unpleasant and lasting reactions to our injections, as you can see by the discussions here. I would like to assure you, that based on current information, we are a very small minority of those immunized, and most of us find our reactions taper off over time. If yours does not, be sure to contact your provider for help.

The current advice is still for virtually everyone to get immunized, unless you are allergic, because the side effects are less dire than the possible outcome if you become infected. We now know two things for sure - it is not only a risk of hospitalization or death from Covid, but the lasting effects being felt by people who may only have had a mild case. We also know that with other health issues, we have a MUCH higher risk of serious infection and of serious long term issues.

Do you plan to consult your physician, and to get your second dose?
Sue

My symptoms were resolved from the 1st dose before I got the 2nd vaccine.

@tracyt my neuro justified getting the 2nd vaccine by telling me that if I was having some type of mild Guillain-Barré reaction, chances were overwhelmingly in my favor that it wouldn’t happen again. I.e. lightning wouldn’t strike twice. Although I didn’t find that reasoning very reassuring, I was at the time a very big supporter of the vaccine (and I’m not sure that’s changed) and I was eager to be fully vaccinated as I was expecting my first 2 grandchildren. I feel very fortunate that he got lucky and was right with that theory. I think the only thing he really had to base his advice on was the fact that no one ever seems to get GB twice. It was such early days of the vaccine. I’m a nurse and I was literally one of the first people in line to get it at my workplace.

I’m so glad it worked out!! I’m a nurse too so I was early as well. The neurologist and other MDs I saw (I ended up at ER to rule out GBS) said that were nervous bc they didn’t know how I would react, but I def didn’t have GBS. Makes me def wonder how things would have went with dose 2??

Has anyone taken steroids for their covid vaccine induced neuropathy and did it help? Since I’m still having pain from my first shot my doctor is suggesting I take steroids 2 weeks after my 2nd shot.

I am really concerned. The neuropathy from my vaccine had almost totally subsided but the last two days I have seen an increase in numbness in my feet and tingling, very dizzy to the point of, at times, almost falling, and terrible pain in my arm where I got the injection. I am about 3 weeks out from the 2nd vaccine. My arm is actually throbbing like I just got the shot today! This is very scary! Who is going to listen to me? My symptoms had basically subsided, now they are coming back full tilt!

I had severe inflammation after my flu vaccine (before the Covid vaccine) and finally had to resort to steroids to calm the flare. I have flared after both Covid vaccines, but managed without another course.
Sue

I did steroids about 2-3 weeks after. Maybe slight improvement but not drastic.

I've been monitoring the VAERS reported cases of peripheral neuropathy over the past few weeks. Pfizer seems to have the most (137), followed by Moderna (100), with J&J further behind (21), which is roughly in line with the distribution of US doses by manufacturer. Of course, these are all extremely low numbers, and it's understandable why there has not been much attention called to them yet - there also isn't data on how many total people with nerve issues have taken each vaccine (to see what % end up with adverse events).

There seems to be a mix of people here who were fine with the vaccine, and those who had bad neurological reactions - I'm curious if there's any pattern in terms of the root cause of pre-existing nerve issues (VAERS data often doesn't include much on prior history, usually just cites pre-existing neuropathy in general).

I thought I'd create a basic online survey (via Google forms) for anyone here who'd like to anonymously share some info about their vaccine experience - specifically looking for both groups of people (symptoms/no symptoms). Feel free to pass along to anyone with neuropathy who might be interested:
https://forms.gle/2Tggt6EY1WfsgxcB7
Correlation does not imply causation (and this is hardly a scientifically rigorous study), but it would be interesting to visualize the data, as no one else out there seems to be looking at it closely.

Thanks!