COVID vaccines and neuropathy

Hello @kathleen123, Welcome to Connect. I'm really sorry to hear that your first Pfizer COVID vaccine made your neuropathy symptoms worse. I'm scheduled for my 2nd dose Feb 26th. I don't think anyone can answer your question about the side effects and I agree with your internist that there just is not enough data to know. The CDC does have some information but I think it's still too early.

Local Reactions, Systemic Reactions, Adverse Events, and Serious Adverse Events: Pfizer-BioNTech COVID-19 Vaccine:
- https://www.cdc.gov/vaccines/covid-19/info-by-product/pfizer/reactogenicity.html

My personal reason for getting the vaccine and the second one also is that which would be worse - getting COVID or having my neuropathy flare which may not be desirable but the lesser of two evils (IMHO). You might find the following Q&A helpful.

Mayo Clinic Q and A: Neurologic function and COVID-19: https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-neurologic-function-and-covid-19/

Hi, I'm Ninette from Antwerp (Belgium). I have SFN after a spinal stroke in 2018 but had learned to live with the pain more or less. Then after my first Moderna shot in April of this year, I developed leg & feet cramps , SFN got a lot worse and it lasted for 4 weeks. I didn't know Moderna was the cause. A month later, a week after my second dose, the same thing happened and now it lasted 5 weeks. I started to see the link. Almost 3 weeks ago I had my Moderna booster and guess what... the cramps and nerve pain (and even bladder issues) are back in full effect. I wonder for how long this time around. Of course this is still preferable to getting Covid, but I wish there would be more research into this and it would be better known (preferably without scaring the hesitating people away) so we can be reassured that this is 'only' temporary and without further damage. Even doctors don't know about this, they think I'm overreacting (well, my nerves sure are). Not really looking forward to shot nr 4- which surely is in our future somewhere. These are strange times to live in!

Although fully vaccinated, staying out of stores, using Walmart pick-up into my trunk for groceries, pharmacy delivery for meds, curbside pick-up to back seat for restaurant food now and then, and faithful masking/distancing, no visiting indoors- I got break-through COVID- sick, sick, sick. Luckily was eligible for IV monoclonal antibodies, got better fast. Gave it to my husband, despite isolation and all precautions, he was also eligible also for the IV, got it on Day 2, symptoms very mild.
In our area now, the IV antibiotics are very precious- my rheumatologist told me 2 wks ago while at appt, that if you are eligible, you go into a lottery pool, if you are picked, you have to go to the main hospital of the health system (2 hour drive away) to receive the IV. Maybe check how it is in your area before declining the booster. CDC/my PCP says you have to wait 90 days after IV treatment to receive booster, we’re signed up for next week.

Sorry to write you two replies but I wanted to add that all of my doctors believed me immediately about the flares - so that was good. As a person who struggled for years to get to a diagnosis, I am grateful for that. I can imagine many will not get the support of their providers.
I reported my symptoms to my immunologist, PCP, the CDC (I signed up for that after test survey), my pharmacist, and The Immune Deficiency Foundation. I felt it important to share my experience for that very reason - so many do get doubted.

Hi, I'm Ninette from Antwerp (Belgium). I have SFN after a spinal stroke in 2018 but had learned to live with the pain more or less. Then after my first Moderna shot in April of this year, I developed leg & feet cramps , SFN got a lot worse and it lasted for 4 weeks. I didn't know Moderna was the cause. A month later, a week after my second dose, the same thing happened and now it lasted 5 weeks. I started to see the link. Almost 3 weeks ago I had my Moderna booster and guess what... the cramps and nerve pain (and even bladder issues) are back in full effect. I wonder for how long this time around. Of course this is still preferable to getting Covid, but I wish there would be more research into this and it would be better known (preferably without scaring the hesitating people away) so we can be reassured that this is 'only' temporary and without further damage. Even doctors don't know about this, they think I'm overreacting (well, my nerves sure are). Not really looking forward to shot nr 4- which surely is in our future somewhere. These are strange times to live in!

My neuropathy gog worse after the second Moderna vaccination. Much worse.

Love the metaphorical spin! Like you, some of my symptoms flared after the shots, they’ve reduced some. Although the numbness in my extremities continues to spread. My neurologist recognized my symptoms as a Sjogren’s flare. I’m glad you’re doctors recognized yours as a flare. I’m unfortunately reluctant to get a booster because
of this.