Shingrix and peripheral neuropathy

I have been surfing this site for info re ShingRix. Immediately after my first ShingRix, on March 12, 2019, I had what I thought were to be symptoms or Restless Leg. It was five months, a sleep study, and a myriad of blood tests before a neurologist did an EMG and said I have Idiopathic sensory neuropathy of unknown etiology. I don’t feel it has progressed beyond my toes and lower legs. I am taking Gabapentin, 600 mg at bedtime and Amitriptyline 25mg at 6 p.m. I have never increased this. I sleep well 95% for the time, do have a hard time getting up early in the morning, but do not feel the need for a nap during the day. One of my immune test results is a bit off but no treatment for this located. Based on my history, I am unwilling to have the 2nd ShingRix. Yoga helps a lot. My balance is good as is my gait. Any thoughts? Thanks from this 77.5 yr old female.

There have been a few reports of this same experience after receiving a Shingrix shot so I do not think it is coincidental. For this reason I will not get one. Every time I get even a little sick my neuropathy flares up so I try to avoid anything that disrupts my immune system even though this too is risky. Helen

@helennicola I did get the shots the only thing I noticed my arm site of injection was sore for months

I had my second Shingrix shot on Jan. 15, and woke up next morning with both lower legs burning. Almost 6 weeks later, and still burning.

Hello @3boysandacat, Welcome to Connect. Thank you for sharing your experience with the second Shingrix shot. Have you shared the symptoms with your doctor to see if they have any suggestions? Did you also have some side effects from your first Shingrix shot?

I think @dablues had similar side effects from the Shingrix shot and might have some suggestions for you.

Thank you, I will check with them. I only had a terribly sore arm with the first Shingrix shot, which I received in Oct. 2019. I did have a red area, about a 5 inch circle–most of my upper arm, around the injection site. I couldn't lay on my arm for about a week, and then it itched to the point it woke me up all night. That went on for several days.
I had the second shot on Jan. 15, 2020. I waited a couple weeks before contacting my doctor, thinking that the burning would go away as suddenly as it had come, but it didn't. I contacted my doctor, who did blood work. Everything was good there, with no indication of any autoimmune disease or vitamin deficiencies. He referred me to a neurologist who checked me out thoroughly and could find nothing wrong. This neurologist is very open to the idea of the burning coming from the vaccine. He is an older gentleman who has lots of experience, and said that he has seen things like this from other vaccines. I am to go back in a couple months if the burning is still there.
My burning is worse during the day, and I just tolerate it. At night I use essential oils on my legs, as they seem to calm my legs (restless legs) and allow me to sleep. I have had RLS for 30 years that comes and goes for a few weeks at a time, and then goes away. When this burning started, it seemed to jump start the RLS into full speed, and it is still going strong.
I am sorry so many seem to be suffering from these vaccines, but it does help to know that I'm not the only one!

@3boys, please keep us informed. It would be interesting to know if anyone’s neuropathy onset coincided with a flu shot. Is it possible that something which interferes with one’s natural immune system defenses could have negative implications? That would be pretty scary.

Is any healthcare system gathering data re the Shingrix vaccine and side effects?

@memomsloan, I'm not sure if any healthcare system gathers data on the Shingrix vaccine. I did participate in a Mayo Clinic flu vaccine study in 2018 that was to see how the current flu vaccine effects the elderly ☺ but I don't think they share that data with the public. The CDC does track that kind of data though. Here's some information that you may not have seen already.

New CDC Report Shows Serious Adverse Effects are Rare With Shingles Vaccination (Feb 2019)
— https://www.pharmacytimes.com/contributor/jennifer-gershman-pharmd-cph/2019/02/new-cdc-report-shows-serious-adverse-effects-are-rare-with-shingles-vaccination

CDC – Shingles (Herpes Zoster) Vaccines — https://www.cdc.gov/vaccinesafety/vaccines/shingles-herpes-vaccine.html

This really doesn't apply to what you just said, but when I received my first Shingrix vaccine, I was given a pneumonia vaccine AND a flu shot all at the same time. I was told it was okay to do that. I just had the sore arm, with the large red itchy spot on that one. It wasn't until I had the second Shingrix, by itself, shot that I had any problems.