COVID vaccines and neuropathy

Posted by cue @cue, Feb 15, 2021

I am 85 with small fiber neuropathy that is getting worse. My neurologist thought it would be a good idea for me to wait with the covid vaccine and not be first in line to see how it affected other people with neuropathy. Probably because it is a new technology. Has anyone had a problem with neuropathy after receiving the vaccine? If so, which vaccine?

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cit10jetjockey | @cit10jetjockey | Oct 8 7:11am

I've had PN for years now. I have the numbness and tingling but zero pain. I had Covid when it first came out and I had the Moderna vaccine. I’ve been taking the Moderna boosters ever since and it’s been over two years since I had Covid. I have zero pain and never had any pain. I have balance issues but I still walk without a cain. I’m a 85 year old male.

pablomm | @pablomm | Oct 9 11:47am

Moderna had a negative effect x2 on my PN. I’m 62 and won’t do another Covid shot.

artemis1886 | @artemis1886 | Oct 10 1:22am

In reply to @jakedduck1 "@artemis1886 I’m sorry to hear that. Do you have Diabetes? Jake" + (show)

No I am not diabetic

jedge54 | @jedge54 | Oct 10 10:32am

I am 72 and was diagnosed with CIDP after my third Pfizer COVID-19 vaccine. There is very little information on the link between CIDP and the COVID-19 vaccine but I'm inclined to think they are related, I've had iViG and heavy doses of methylprednisone(steroids) and neither have helped. I am getting weaker and easily fatigued. Does anyone know of any other treatments that might help me? I am looking at VyVgart Hytrulo as a possibility, but it is $17,00 per dose.
Thank you,
John

hello2 | @hello2 | Oct 10 11:03am

So Sorry. What is CIPD? I never heard of it.

Best of luck to you. Think positive. Something will help eventually.

jedge54 | @jedge54 | Oct 10 2:28pm

In reply to @hello2 "So Sorry. What is CIPD? I never heard of it. Best of luck to you. Think..." + (show)

Chronic Inflammatory Demyelinating Polyneuropathy,
Thanks for the thought

artemis1886 | @artemis1886 | Oct 12 7:53am

In reply to @jedge54 "I am 72 and was diagnosed with CIDP after my third Pfizer COVID-19 vaccine. There is..." + (show)

Steroid 150 mg IV
Every 4 hours
2 Benadryl one hour prior to infusion
Tylenol 500 mgs
Wait 30 minutes and I am on Panzyga IVIG
Just an fyi I was told to drink 100 ounces of water day before and 100 ounces the day after to prevent migraines after infusion

hello2 | @hello2 | Oct 12 8:53am

In reply to @artemis1886 "Steroid 150 mg IV Every 4 hours 2 Benadryl one hour prior to infusion Tylenol 500..." + (show)

WOW!!!!! You sure are going through so much.
Best of luck to you.

artemis1886 | @artemis1886 | Oct 12 5:32pm

In reply to @jedge54 "I am 72 and was diagnosed with CIDP after my third Pfizer COVID-19 vaccine. There is..." + (show)

How much IVIG? Mine is 5 days a month. It has gotten rid of my dizziness and balance problems. My left leg was dragging along with drop foot. My left leg is not dragging any more. I am waiting to see how long it takes to work on the motor neuropathy. I have several types of neuropathy plus mine in autoimmune related.

jedge54 | @jedge54 | Oct 13 11:07am

I was getting IVIG on two consecutive days every 4 weeks. After 5 months of no improvement it was discontinues. I was referred to a specialist at Penn Medicine and an now on high infusions of methyl prednisone which don’t seem to be helping either.