1. < Autoimmune Diseases

CIDP and the Covid Vaccine

Posted by dellinger @dellinger, Mar 18, 2021

My husband has the auto immune disease. While he had severe neuropathy problems years ago, his problems are minor now, but this is chronic and can be triggered again. His Doctor really can't say whether the vaccine could trigger his CIDP. Anyone have experience with this situation? Thank you.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

dwyermw | @dwyermw | Jun 11, 2022
In reply to @pacer3702 "I'm glad you are doing well! Thank you for sharing the information about amantidine. Was amantidine..." + (show)
@pacer3702

I'm glad you are doing well! Thank you for sharing the information about amantidine. Was amantidine prescribed because you had Covid? Did your Mayo neurologist prescribe it?

Jump to this post

The drug was prescribed for me to help alleviate fatigue

REPLY
reneel | @reneel | Aug 6, 2022
In reply to @francescazama "Hello! I started with toe numbness over two years ago and the numbness progressed up my..." + (show)
@francescazama

Hello! I started with toe numbness over two years ago and the numbness progressed up my left leg. I had three EMGs(also done on hand)but the neurologist said there was no nerve injury(last EMG five months ago). I had the first Pfizer March 14. When I got the jab I felt tingling down my spine and as if a shock went through my body(no anaphylaxis though). I am a US citizen in Canada and the second jab is scheduled July 14(longer between time in Canada). Since the first jab, both legs have become heavy and stiff and the hands feel as if no circulation. I am concerned about the second shot. Whether I have actually CIDP or another neurological problem (so difficult to diagnose CIDP) I am concerned about the second shot because the first one exacerbated my initial symptoms and added new ones.

Jump to this post

Maybe they should test you for Small nerve fiber neuropathy.
Usually the EMG tests for large nerve damage.
Good luck to you
There are neurologists who specialize in peripheral neuropathy

REPLY
lpinzon61 | @lpinzon61 | Nov 23, 2022

Today I was diagnosed having CIDP. After my 3rd vaccine on Dec 2021, I started having numbness and weakness in my legs and hands. I was given options of taking infusion of cortisone or IVIG. Nothing showed in bloodwork and in EMG test. It was based on the doctor testing my strength in arms and legs. Don’t know what to do.

REPLY
1 reply
kzeiss | @kzeiss | Nov 23, 2022
In reply to @kchap23 "I got my second Moderna shot on March 11th of this year. My birthday. Happy birthday..." + (show)
@kchap23

I got my second Moderna shot on March 11th of this year. My birthday. Happy birthday to me! The following six weeks consisted of a persistent weakening in the legs, such that I was having difficulty getting up the stairs in my condo. In addition, I was also vomiting two to three times a day, and within that six lost approximately 20 pounds. I was teleworking three days a week and expected to show up at the office the other two. Towards the end of the six weeks, I was calling in a lot, asking if I could work remotely, as I could barely walk. My employer's patience was running out. When I did get in to see my PCP, she barely recognized me. She said I looked like an old woman, skinny, hunched over, walking in on a cane, when previously she'd seen me as young and vibrant. She referred me to a neurologist who (if I recall correctly - my brain got really foggy around this time) initially diagnosed me with GBS, but did schedule me for IVIg outpatient treatment. Well, that didn't work out very well. My blood pressure shot up to 220 over another ungodly high number and the outpatient facility was not set up for that type of medical emergency. The IV was removed and I was transported to a local emergency room for admission to the hospital. I spent a week in the hospital, most of which is all a blur in my memory, receiving the first week of IVIg treatment. That was in early June. After discharge, I spent most of the summer off work, on FMLA, and at my mother's home in Florida, where I worked hard on getting "well." I spent my time in the pool, swimming as much as I could, and then sleeping. So passed the summer of 2021. September took me home and back to work again. October and November both saw additional weeks of IVIg treatment, and the start of physical therapy, which brings me to now. I'm really frustrated. I can't button clothes, which means everything I put on is in the frumpy zone. I'm not sure if I'll ever be able to wear heels again. I can walk without the can, again, which I know to be progress, but it's not like I'll be running any marathons soon. My hands and feet are numb and tingle (more like vibrate) all day and all night, such that my entire body is constantly "thrumming." The only time my body does not feel like that is if I am completely still, almost to the point of not breathing. My work feels as though these treatments, my whole time off work really has been a big inconvenience. If I had all this to do over, I would have never gotten those stupid vaccines. And I just found out I have to go take the test for COVID again anyway because the man I love tested positive two days ago. So all of this has been in vain.

Jump to this post

Just a suggestion: go to the gbs-cidp.org for more informations. Also, my partner was diagnosed with CIDP 15 years ago. We highly recommend going to a major city and teaching hospital where they see many cases of GBS and CIDP. If you can't get an appt. go to the ER. While he still suffers from what they term"exercise fatigue", he has been freed rom his paralysis. Wishing you all positive thought for finding good doctor that specializes in this illness..

REPLY
gillysmom | @gillysmom | Nov 23, 2022
In reply to @lpinzon61 "Today I was diagnosed having CIDP. After my 3rd vaccine on Dec 2021, I started having..." + (show)
@lpinzon61

Today I was diagnosed having CIDP. After my 3rd vaccine on Dec 2021, I started having numbness and weakness in my legs and hands. I was given options of taking infusion of cortisone or IVIG. Nothing showed in bloodwork and in EMG test. It was based on the doctor testing my strength in arms and legs. Don’t know what to do.

Jump to this post

Cortisone is not a good med for long term use. IVIG is given two ways, either intravenously by an infsion nurse once every 4weeks. It can also be self adminstered weekly with a hand held pump and prefilled syringes with replacement gamma globulin, mainly IgG. I have used the 2nd method, which is far safer, for the past 8 1/2 years with no problems. My immunolologist prescribed Hizentra, which I think is a superior product, The weekly schedule for subcu self administering means you are only taking 1/4 of the monthly dose with each infusion. Your body never has to cope with the huge monthly dose. Another advantage of subcu weekly infusions is the serum goes into your flesh (not your blood stream) and is more slowly absorbed by your body versus the IV route, which is directly into your vein and organs. There is the risk of kidney damage and other problems with IVIG. I'm sure that risk is greatly reduced with subcu infusion. I infuse my thighs with a 4 needle set, there are two 1/3 inch needles into each leg, and numbing cream makes the neele punctures very easy. I have never had a reaction or problem, and I am 90 yo. with 4 autoimmune diseases and a pig arterial valve and a bunch of other comorbidities. The Hizentra saved my life, because it prevented the destruction of the replacement heart valve by the same pneumonia bug that destroyed my biological valve. Your alternatives are not very good - disease progression and increasing weakness. I needed a friend to sit with me for a month of infusions until I built the courage to do it on my own. Now its seems simple.
all the best to you with making a good decision. I think the sucu route is a bother, but your best health option.

REPLY
raphyboi | @raphyboi | Dec 18, 2022

The vaccine can definitely trigger a worse reaction. It put me in a wheelchair until it wore off about 6 months later. This was after two shots of Phizer. I then got on Evusheld. However it now doesn't work against the new variants.

REPLY
raphyboi | @raphyboi | Dec 18, 2022
In reply to @gshore715 "I have cidp. For 10 years it got progressively worse until I could not even button..." + (show)
@gshore715

I have cidp. For 10 years it got progressively worse until I could not even button my shirt. I have been receiving immunoglobulin for almost a year and am 71. My doctor has advised me to wait on the vaccine because he is worried it may reverse my progress with my treatment. I want to travel again and live normally so I am really torn as to what I should do.

Jump to this post

In my experience, CIDP since 1996 , the Phizer vaccine put me in wheelchair until it wore off 6 months later.

REPLY
iscream247 | @iscream247 | Jul 21, 2023
In reply to @hazelnut "I have polyneuropathy among Afib and other conditions. I fear not getting the vaccine and I..." + (show)
@hazelnut

I have polyneuropathy among Afib and other conditions. I fear not getting the vaccine and I fear getting the vaccine. I am 71 and after a steroid injection that hit a nerve I have to use a walker or cane. One of my younger friends got bells palsy after the first injection and was advised by her doctor to NOT get the second one. I was told over a year ago 367 days to be exact that I need to stay in and away from hospitals, clinics, etc. I have been home bound that long. All doc appointments have been virtual. So, is it really true that side effects are minimal when so little time and studies were done on the vaccines?

Jump to this post

I am also 71 and have a history of Afib and other things. My symptoms with polyneuropathy began just prior to Easter. I have been Two Covid vaccines and one booster. I am now wondering if there is a relationship between the vaccines and my polyneuropathy.

REPLY
View MoreView Less
Please sign in or register to post a reply.