Covid 19 Vaccine

mRNA vaccines are a new type of vaccine to protect against infectious diseases. To trigger an immune response, many vaccines put a weakened or inactivated germ into our bodies. This is how most Flu shots work which have triggered GBS/CIDP in a small group of people. But not mRNA vaccines. Instead, they teach our cells how to make a protein—or even just a piece of a protein—that triggers a somewhat different immune response. That immune response, which produces antibodies, is what protects us from getting infected if the real virus (Covid-19) enters our bodies.

Not everyone will have an identical immune response, and the vaccine could trigger a reoccurrence of GBS/CIDP in rare instances, requiring treatment. But Covid-19 will kill many of us and I would rather deal with IVIg and Plasma Exchange than find myself on the verge of death!

Here is the latest mRNA vaccine analysis from the CDC:
https://www.cnbc.com/2021/01/06/cdc-says-severe-allergic-reactions-to-covid-vaccine-run-10-times-the-flu-shot-but-still-rare.html

Just wondering if anyone received or is going to receive the covid vaccine and what their response was? For me I am going to get the vaccine but am a little worried. I did receive the flu vaccine this year and seemed to be ok. I like Jim would rather deal with IVIG and Plasma exchange if needed.

And the very next paragraph specfically addresses GBS:

People who have previously had Guillain-Barre syndrome

Persons who have previously had GBS may receive an mRNA COVID-19 vaccine. To date, no cases of Guillain-Barre syndrome (GBS) have been reported following vaccination among participants in the mRNA COVID-19 vaccine clinical trials. With few exceptions, the independent Advisory Committee on Immunization Practices (ACIP) general best practice guidelines for immunization do not include a history of GBS as a precaution to vaccination with other vaccines.

https://www.cdc.gov/coronavirus/2019-ncov/vaccines/recommendations/underlying-conditions.html#:~:text=People%20who%20have%20autoimmune%20conditions,for%20enrollment%20in%20clinical%20trials.

I got my 1st Pfizer Covid-19 shot a couple hours ago at a mega site about 35 miles from my house. The line was about a 2 hour wait. After the shot they make you wait in your car 15 minutes to see if you have a reaction. So far, I have not had any type of reaction, not even a sore arm.

My 2nd shot is mid-February. I’ll post again tomorrow with any updates.

I had my first Moderna shot recently and had no reaction to it. I intend to get the second shot on the day it is scheduled.

I had a fairly severe case of GBS in late 2012. This past Sunday, 2/14. I received the first dose of the Moderna vaccine. As of now I’ve had no reaction. My second dose is on 3/14. I’ll let you know how that goes.

I had full blown GBS in 2004, put me in a wheel chair. Was back to work in 4 months but still have minor issues from GBS to this day – leg pain/discomfort. All during 2020 I ask every doctor I met – even in the ER getting my finger stitched I asked about the Covit-19 vaccines, taking it with my GBS background. They had no real answer, no data, no info – all said to put off the vaccine until someone else with a GBS history tried it.

Not much choice. We get Covit-19 and then deal with that + it triggering a second GBS episode? Sounds fatal to me. Take the vaccine and maybe it triggers a second GBS episode? Ok, I lived through that once. I know the symptoms and can get into the doc faster than last time.

On that note, I had my first Pfizer dose 21 January and not one single issue. Second dose was a week ago on Feb 11 and no issues at all.

Well one issue – I have a smile on my face now when thinking about this subject!

If my condition changes – I will pop in here and update.

Ask the Experts Videocast Series Continues..

GBS/CIDP Foundation Ask the Expert Videocast Series Continues on February 25th, 2021 when Dr. Peter Donofrio, Chairman of the GBS|CIDP Foundation Global Medical Advisory Board, and Executive Director, Lisa Butler, discuss “Vaccine FAQs from the GBS|CIDP Community.”

Panelists will answer questions previously provided from members like “Can you explain the differences in the vaccines that are currently available?” and “I had GBS, can I still get the vaccine?” “If I have CIDP, when in my infusion cycle is the best time to get a vaccine?” – plus more. A link to the episode can be found on February 25th at 1PM (EST), here at Ask the Expert Videocast episodes:

Ask the Expert Videocast

New info about the vaccines:
https://www.msn.com/en-us/health/medical/some-vaccines-effective-after-one-dose-can-be-stored-in-normal-freezers/ar-BB1dP5Q6?ocid=BingNews

I received my 2nd Pfizer Coronavirus vaccine shot on 2/19/21. Besides a slightly sore arm at the injection site (normal for me with any shot) I woke up very tired this morning and slept in LOL! Those are the only side effects for me thus far. I’ll post more if I have any kind of reaction.

As Ila has suggested, if others have had the shots maybe you can post your experiences with it in this forum thread. That would help many folks know more about vaccine reactions for those of us with GBS, CIDP, and it’s variants.

Thanks

Hi. I have a scheduled appointment for the vaccine this Wednesday. I live in NY and am only eligible because I have CIDP… I think. The website and only info I can get is health related eligibility if one has a neurological disorder. Does anyone happen to know about NY eligibility?

Thanks Jim!

Just to follow back up. I had the Pfizer vaccine earlier today. No reaction. Not even a sore arm. Looking forward to getting round 2.

All vaccine brands side effects update as of 3/1/21:
https://www.yahoo.com/lifestyle/heres-everything-know-side-effects-031521941.html

Glad to see so many of you got the vaccine without any major side effects. I am scheduled for my on Saturday. Did any of you see this article/study:
https://www.cureus.com/articles/52295-neurological-complications-of-covid-19-guillain-barre-syndrome-following-pfizer-covid-19-vaccine

Had my second Moderna dose on 3/14. Other than a slightly sore arm, I am reaction free.

Jim-LA, Does anyone at GBS/CIPD review the VAERS Data from the CDC? I scanned the 2021 file for GBS and got almost 2 dozen hits. Is there a way to get an update on these cases from the CDC?

Hi everyone just needing some advice I have an upcoming appointment to get the vaccine but I don’t have enough time to get a medical referral from my doctor until April 1 has anyone had any luck with showing like a health summary from your doctors office that would show your being treating for CIDP & other heath related conditions?

Do not receive a “live” vaccine (like J&J) while using immune globulin (IVIg/SCIg). The vaccine may not work as well and may not fully protect you from Covid. The newer mRNA vaccines are less likely to be negated by the Ig treatments.

I got the J&J vaccine yesterday (even though they told me Pfizer when I made the appointment). I’m not on IVIg. Almost a year and a half out from being diagnosed with GBS. They gave me a little trouble, not wanting to give me the vaccine without verification from my doctor that it was ok. T=It was resolved quickly. Anyone else run into anything like that? Feeling fine today.

I got the 2nd Moderna vaccine 2 weeks ago. 1st shot felt a little off for a couple days.
The 2nd shot, I felt it “big time” for over a week. But my non GBS wife felt the same way.
So now, gbs or not, I am going to enjoy the outdoor life again……………

I has GB in 2009. I had a mild case of COVID-19 at the end of March last year. Two weeks ago I had a blood test for anti bodies. It was positive. After one year. Has anyone else gotten the vaccine after having the virus?

Yesterday I was on the “Newly Diagnosed Coffee Chat” sponsored by GBS|CIDP Foundation. There were 19 people on the call. 2 were recent GBS patients that developed GBS after the Pfizer vaccine and 1 person whom already had GBS had a severe reaction to the Moderna vaccine. Food for thought.

So I don’t really follow individual experiences because we are all so different if 1000 people out of billions have a bad reaction to a vaccine it is a very uncommon side effect. That’s why I look for the cumulative experiences. I have CIDP, I got the Pfizer vaccine. No reaction to the first shot and one day of fatigue (worse than my usual) after the second. No problems after that one day.

Paul Thanks for your response. I agree everyone is different.

I came down with GBS Nov 20, 2019 and am practically back to normal – I am 74. I Spent 5 weeks in the hospital of which 3 in the ICU. I had incredible lower back pain 24/7 – nothing helped until after receiving the treatments. Initially had 5 treatments of IV/IG and subsequently 5 treatments of plasma exchange. Jan through end Nov 2020 continued with IV/IG from 3 treatments every 4 weeks to 2 and then one. Treatment was discontinued end Nov 2020 and have had no relapses. Only thing was fatigue especially my thighs. I’ve had may second shot of the Pfizer vaccine with minor shoulder muscle pain but so far all fine. I have also gone back to swimming 3 to 4 times a week this month to try and get back to physical level pre-GBS.
I think it is extremely important to stay physically active for both body and mind.

I just wanted to share. I had a Diagnosis of GBS in 1996, Flu vaccine fall of 95, and Tetanus shot April 96, GBS set in, also have Hashimotos Thyroiditis …. anyhow, I had the J & J vaccine on the 7th. Aside from a sore arm, and a little bit of aches, no adverse reactions. I pondered for months about taking it, my Doctor advised against it, he feels like there needs to be much more research. I have however been reading the Forum, and this made me feel very confident on going ahead. I am almost a week out, and still feeling just fine. Thanks for keep everyone up to date, and sharing.

I’m really scared to get COVID vaccine since I got CIDP from flu shot.   Im severe CIDP , nothing “ normal “ about my life.
Doctors are 50/50  ( most don’t understand how you get CIDP or ever changing symptoms ) on getting the vaccine,  but if my body attacked “ self “ from flu shot why chance another vaccine.

@ResearchingGBS I can certainly relate to your concerns and being in the fence. Vaccines are intended to stimulate an immune response. I think that’s the point.

Of course, there were new two people who  developed GBS or CIDP and another who had reactivation of their disease as a result of that call.    So that is 3 out of 18 who had adverse reactions.

I’m not sure whether this would affect your deliberations, but do we know really this? Correlation doesn’t necessarily mean causal.

Best wishes in deciding what to do.

Tried to delete my message as my figures are probably not accurate.  It may be 3 people out of millions as the number of people on this site are limited and do not include everyone who has had vaccine in USA.   I just counted those people on this page and there are others who posted on other pages.  So just wanted to clarify that since I was unable to delete this post,  I don’t want to discourage anyone with figures which are not comprehensive.   Also, you are right, correlation does not mean causal.

I had gbs on 6/13/2013. Was left with severe axonal residual nerve damage all over but more so from waist down. I was very concerned about the COVID-19 vaccines and finally talked to Doctor Kazim Sheik neurologist at UT Houston who is on the GBS foundation advisory board. (I am a patient of his) Since my trigger was due to food poisoning he urged me to have the vaccine. Said that had my trigger had been a flu shot or similar would still recommend COVID vaccine but with closer monitoring. Complications for those afflicted with COVID-19 can be severe and or deadly esp for ones with pre existing health issues. I had my second Pfizer vaccine on April 5. No reaction at all then or since. Take Care Folks

I had the second dose of the Moderna vacine in 3/14. To date I am fine. The reason I confidently took the vaccine is because of the advice I receive from my cousin, a retired infectious disease doctor. He told me (in simple terms) is that the COVID vaccines, Pfizer and Moderna, are nothing like a flu shot. Again, in simple terms, a flu shot injects the patient with a small dose of the flu to build up ones immune system while the COVID vaccine blocks COVID and does not attempt to build up the immune system. So, as far as I understand, the risk/reward of getting vaccinated against COVID is so overwhelming in favor of getting vaccinated. I am now 100% vaccinated and relieved that I am.

Thanks Eric  Good information

My concern: will natural antibodies react to the vaccine? I had G-B and a mild case of  the COVID virus. I tested positive for the antibodies a year after I had the virus. So should I mix natural and artificial antibodies? Will that trigger a bad reaction? Has anyone taken the vaccine after having the virus?

Thanks

Recent research has suggested mRNA vaccines will last longer than traditional vaccines (like the J&J vaccine that has actual Covid-19 in it). The Pfizer and Moderna vaccines have also shown protection against variants such as the delta variant.

According to Dr Ali Ellebedy, an immunologist at Washington University in St. Louis: “The fact that the reactions continued for almost four months after vaccination — that’s a very, very good sign,” Dr. Ellebedy said. Germinal centers typically peak one to two weeks after traditional immunization, and then wane. This has not been the case with mRNA vaccines.

“Usually by four to six weeks, there’s not much left,” said DR Deepta Bhattacharya, an immunologist at the University of Arizona. But germinal centers stimulated by the mRNA vaccines are “still going, months into it, and not a lot of decline in most people.”

Here is a comparison of the mRNA vaccines to traditional vaccines:

https://www.breakthroughs.com/advancing-medical-research/what-makes-rna-vaccine-different-conventional-vaccine

Yes. My wife, who has not had GBS, had COVID just before Thanksgiving. She was asymptomatic and required no hospitalization. She too had her second dose of the Moderna vaccine on 3/14. As of now, she is fine having had no reaction to the vaccine.

Pfizer and BioNTech announced Today they are developing a Covid-19 booster shot intended to target the delta variant as concerns rise about the highly transmissible strain that is already the dominant form of the disease in the United States. They will be recommending the booster shot about 9 months after the initial 2 shots, then annually.

The booster is being tested in their clinical trial and I hope we hear about results soon.

Thank for the article.

I had GBS 1989 Watched body deteriorate before me. Spent 10 days in Hospital. Could not open car door with left hand. To start my car I wrapped right hand around ignition and pushed with left and right arms to  drive to Hospital. I try to stay in good physical condition. I was able to regain most everything back. Took a lot of hard work. I been able complete 90 or more marathons since GBS.

I am not taking  the vaccine. GBS mortality rate 4 to 7%. GBS reoccurrence 10 to 15%. Covid -19 death rate 1.8%. I wear my mask and try not to get to to much. Also take vitiam C and Immune Booster.

Thank you dcole4757

Can you tell us where your data came from?

research on web sites

https://covidusa.net

rest data came from GBS web site

The Food and Drug Administration is reportedly expected to administer a new warning on the Johnson & Johnson COVIDC-19 vaccine and a possible link to Guillain-Barré, a rare autoimmune nerve disorder.

The Washington Post, citing four individuals familiar with the matter, said the warning is expected after about 100 cases of Guillain-Barré occurred against a backdrop of nearly 12.8 million Johnson & Johnson vaccine recipients. The Post reported the cases occurred about two weeks post-vaccination, mostly among men, with many aged over 50.

I fit right within that group of J&J recipients. But we ought to keep in mind that this a pretty tiny percentage, and they talk about 100 *preliminary*, not confirmed, reports. So it’s always good to keep reports such as this one in proper perspective. All too often FDA and CDC releases, warnings, etc. attract alarmist reactions in social and popular media.

Hi all,

I am here to share. I am Covid Positive. I had the vaccine.  I thought I made the right choice.  I have been very sick the last week.  I spent the evening in the ER last night for chest tightness.  I Have Covid Pnemonia.  I consider myself fairly healthy.  I work out min 5 days a week, weights, cardio, stretching.  I was checked for clots bc of the pnemonia, clear. My heart looked  strong.  I am running fever now. Took a week for that to develop.  I have been choking n my sleep. Was confirmed positive on the 10th.  My husband has it as well.  However he had Pfizer and I had J and J.  Just wanted to share, this is something we all need to be very very aware of …. far from over yet. Thanks, Courtenay Griffin, Midlothian, VA

Sorry to hear this, Courtenay. I wish you a quick recovery.

Today I received my Pfizer booster shot. This is my third Pfizer shot. The pharmacist called it in to confirm “immunocompromised” and found that having had GBS/CIDP qualifies me for the booster. I’ll post back if I have any negative reaction from this shot.

Wow, thanks Jim. That’s great to know (who decides these things, anyway?). Was it large chain pharmacy? I’d go and get one too right away, except that I got the J&J. I wouldn’t get a second one of those, though.

Hello,

I got the Pfizer vaccine in May and now have nerve problems.

I still have a nerve across my stomach that feels like a wire as if an electric fence.  I can feel it throughout the day and in my sleep.  The nerves on my side have pressure as well as on my back and along my stomach.  This is a lot better than it was.

I used to have extreme nerve pressure throughout my back, stomach, sides, and torso.  This included nerves that felt pancaked together and also as if they were trying to break apart (and get unstuck somehow).  When I walked, the nerves would rub together around my waist.

Ivermectin helped me a little as did Pepcid (it’s an H2 blocker).  Further, liquid liposomal glutathione helped somewhat too.

I hope that either the vaccine wears off, my reaction to it wears off, or both in time.

In my search for answers, I have met many people online who are suffering far worse than I.  Much of their suffering sounds like GBS although many test negative for it.

I received my booster shot at the Walmart pharmacy near me in California. It was free. They initially told me I had to come back in a  few months. When I pressed them about the new CDC guidelines they made some phone calls and told me I can get the shot now. Expect some confusion because this (booster) is all new to most pharmacies.

Wow! I didn’t know about any of the risks. I got sinovac shots almost a month ago and haven’t had any problem. Thank god!

I am new to this forum, so hello (and thanks). I am a 54YO male.  I had a modest case of GBS resulting from a Tdap booster vaccine in 2013; no paralysis, but a few days in the hospital and IVIG treatment.  Never fully recovered 100% functionality, but I was getting too old for pick-up basketball anyway.  No issues with running, weights, golf, etc., so no complaints.  I have not yet received the COVID vaccine.  The rest of my family has been vaccinated.  I have made a couple vaccine appointments, but canceled them out of fear of getting GBS from the shot.  I live in Vermont USA, which has very high community vaccination rates.  I work in an environment with my own office.  I tend to limit my outside activities, but I still do go out to dinners occasionally, grocery store, etc.  My primary care physician has not proven very helpful in giving me any meaningful advice as to whether (or not) I should get the vaccine.  The knee-jerk reaction is that I should get vaccinated in order to help society; not exactly the advice I want from my own physician (who is supposed to be looking out for me).  So, here I am, on this forum.  I have seen the small number of posts from people who have opted to get (or not get) the COVID vaccine.   I remain on the fence, and am looking for additional thoughts from folks on this forum—- did you get the vaccine?  How did you weigh the risk/reward?  Do you know of others like us who aren’t getting the vaccine?  Did you have any reaction to the vaccine?

I got my second Moderna shot May 1st. Both shots gave me a run down feeling, chills, headache and so on.  After the second shot, I started to get numbness in the hands, forearms, legs, and feet.  Additionally my fatigue levels went through the roof and I had facial numbness and my taste was way off (symptoms I got when I first got CIDP 4 years ago).  The numbness in my hands has gotten to the point that it affects my grip and walking on grass points out how weak my ankles have become.

I’ve taken 2 weeks of vacation and so far, decreased stress has helped and my Dr. has upped my IVIg doses.

Just got a pfizer booster today, after getting the first two shots in March.  Was at UAB for visit with my new neurologist-moved from Texas last year. He stated I was eligible for booster, -on hizentra, prednisone, and azathioprine, which qualified me for booster.  Then saw sign up for covid vaccine in lobby-took all of 20 minutes. No side effects noticed yet from booster, and none noticed from the original shots except an incredibly sore arm.

Paul, the newer mRNA vaccines (Pfizer and Moderna) pose the lowest risk of GBS/CIDP. I had my Pfizer booster (3rd shot) 2 weeks ago and have had no side effects. Folks that have taken the J&J and AstraZeneca vaccines face the higher risk since these shots use the older style live virus method.

Hello community, I have my dad at the 68 yo and he had the 1st dose of Pfizer 3 weeks ago. The scheduled 2nd dose is going to within the week. At first, my dad had the latest injection of IVIg in May and it lasts till the 1st dose of Covid done. Recently, my dad got the partial disabilities with weakening legs and arms back. My question would be should we go ahead for the 2nd dose within the week? or should we stop and start the IVIg again prior the vaccination? Due to the high rate of Covid-19 in my country, they are using IVIg for Covid’s patients so it becomes short of IVIg. Anyone has recommend for us, cheers.

There are reports that the vaccine may not work as well while using immune globulin (IVIg/SCIg) and may not fully protect you from Covid with Ig still present (IVIg has a half-life of close to 30 days). The newer mRNA vaccines are less likely to be negated by the Ig treatments, but I would wait a week or two after the 2nd shot before restarting IVIg.

Yeah, the 2nd dose of vaccination are not recommended by the neurologist and few diagnoses have taken placed for my dad. I reckon that  my dad has CIDP since the first time of taken flu shot which demyelin in the cell. Possibly cannot blame the vaccination yet.

I don’t know how many other people are in the same boat as I am (diagnosed with GBS in 2019, 95% recovered now), but after receiving the J&J vaccine six months ago, I asked my doctor about switching over to a mRNA vaccine once they introduce boosters because of the acknowledged association of between the J&J and GBS, and he agreed it was a good idea. Now the whole thing with boosters is up in the air –at least for this week. I’m not officially immunocompromised for the “third” mRNA dose that was introduced in August. So my quandary is how long to wait and how hard to push for a first mRNA shot as a “booster”. I’m sure that it’s going to freak out whichever clinic I call because the request doesn’t fall into any of their official categories and no one seems to be discussing this scenario publicly– heck, they almost refused to give me the J&J when I told them I had been diagnosed with GBS after receiving the flu and shingrix vaccines together in 2019.

I’ve had CIDP for 45 years and used Prednisone for about 15 relapses in the first 38-40 years.   For the last 3 years, I have been on SubQ IG and doing great.  2 years of IVIG before that was good, but the monthly infusions were more roller coaster.  I got the Moderna vaccine in March and April.  A minor 1st and robust 2nd shot.  No complications and no after effects.  So far, I have not had Covid. I am not seeking a booster shot and do not consider myself to be immune compromised, though I do run low on my WBC count.  Seeing a hematologist to figure out if this is related to Hizentra or something else.

Hi ALL,

Just wanted to share my experience with the vaccine. Little bit of my history first, had GBS (AMAN) back in 2013 when I was 32. Quite severe case brought on by food poisoning while travelling in Thailand.   Recovery was about 95%+ and today I don’t have many residuals except for occasional nerve pain in right bicep (I take Lyrica when needed).

I live in Australia were the vaccine roll out had has been quite slow up until mid year. I received my first dose of Pfizer on August 20th. Besides tiredness and a sore arm I didn’t have much of a reaction.

Received my 2nd dose on September 10th. I definitely had a bigger reaction to this with sore aching hands and muscles, fasciculations (which I’ve had on and off for years), nerve pain, flu like symptoms and overall feeling lousy. I was never once concerned that GBS could reoccur but knowing my body I was expecting some sort of reaction. This all subsided after about a week.

It is worth pointing out that the times I have been sick since having GBS, I have had some minor flare up’s with nerve pain etc. My neurologist just says after GBS your body is  hypersensitive so I’m assuming the vaccine can trigger such episodes much like a cold or flu does to me.

I’ve put off getting the vaccine so long because anyone with a history of GBS was excluded from all the testing. However I have found a study (published- JAMA) and I think I am finally going to get it. The thought of having a recurrence terrifies me beyond all belief. Going back to before I recovered (partially) is like my living nightmare.

I think the risk of relapse is higher with the virus than with the vaccine, but real data is hard to find. Below is the best study I’ve found & its the best research so far. It looks as though 1 in 702 had a relapse that required short term medical care. 5 total had some issues, 4 of which were released quickly from the emergency room. Please let me know what you all think!

https://jamanetwork.com/journals/jamaneurology/fullarticle/2783708

BrianF

How are you feeling?

I just received the Moderna booster from my local Walmart Pharmacy. I decided on the Moderna because my last three Covid shots were all Pfizer-BioNTech. I got the shot 24+ hours before my next Dialysis session in case Dialysis might lessen the effect of the shot.

The CDC is also suggesting that those who received the J&J or AstraZenica shots get an mRNA booster.