Covid 19 Vaccine

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    • #117846

      I just listened to a webinar given by Darrell O’Sullivan presented by the Western Neuropathy Association. He clearly stated that the CDC recommends avoiding the vaccine if you have a history of autoimmune conditions. I asked a question – “Were individuals with autoimmune diseases included in the trials”? He said no.

    • #117848
      Jim-LA
      Moderator

      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

    • #117850
      Mike
      Participant

      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.

      • #117965
        ResearchingGBS
        Participant

        I have had 3 yrs. of PT to deal with Guillian Barre due to a pneumonia shot. Pain has gotten worse with flu shots so I did not have one this year. Has anyone developed GB from having their covid vaccine? I am planning on getting it soon but first wanted to know if anyone has had a reaction. I might want to wait for Johnson & Johnson as it is only one shot or I may consider Pfizer as there are less side effects. Seems like I developed weakness and severe pain from the pneumonia shot and then flare ups from the flu shot which caused me to pull muscles and have to have PT all this time until about 6 months ago. Now I am doing all the exercises at home but it is finally about 60% better. I was lucky mine was mild so I did not have to have any infusions. I appreciate all the responses I have read so far. Thanks for sharing and Jim, thanks for posting this.

      • #117983
        Ausvoltz
        Participant

        I had my first covid vaccine 5 days ago, here in Australia we only have the AstraZeneca vaccine I had a high temperature for 48 hours and still feel very fatigued as well.

    • #117857

      From the CDC website
      People who have autoimmune conditions
      People with autoimmune conditions may receive an mRNA COVID-19 vaccine. However, they should be aware that no data are currently available on the safety of mRNA COVID-19 vaccines for them.

      My question is. “Has anyone with MAG received the vaccination”? Please let me know.
      Having been treated with both IVIG and Plasma Exchange with no benefit, I don’t think anyone should be under the false impression that these treatments will provide relief.

    • #117862
      buckthorn
      Participant

      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.

    • #117884
      Jim-LA
      Moderator

      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.

    • #117885
      SandraP
      Participant

      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.

    • #117894
      Eric
      Participant

      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.

    • #117895
      Glacierwolf
      Participant

      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.

    • #117899
      Jim-LA
      Moderator

      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

    • #117900
      Jim-LA
      Moderator
    • #117901

      I had both my vaccinations – Pfizer brand and had mimimal reactions – just a sore arm.

      We should collect data as there is none from the trials. As mentioned by the CDC, individuals who have autoimmune diseases were excluded from the trials. This forum and Jim as moderator would be a good person to do so if he is willing.

      Ila

    • #117902
      Jim-LA
      Moderator

      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

    • #117903
      Paul Buehler
      Participant

      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?

      • #117904
        Jim-LA
        Moderator

        Paul, NYC Phase IB – Underlying Conditions – starting 2/15/21 – People who have the following conditions qualify for the vaccine:

        ­- Cancer (current or in remission, including 9/11-related cancers)
        – Chronic kidney disease
        – Pulmonary disease, including but not limited to COPD (chronic obstructive pulmonary disease), asthma (moderate-to-severe), pulmonary fibrosis, cystic fibrosis and 9/11-related pulmonary diseases
        – Intellectual and developmental disabilities including Down syndrome
        – Heart conditions, including but not limited to heart failure, coronary artery disease, cardiomyopathies or hypertension (high blood pressure)
        – Immunocompromised state (weakened immune system), including but not limited to solid organ transplant or from blood or bone marrow transplant, immune deficiencies, HIV, use of corticosteroids, use of other immune weakening medicines or other causes
        – Severe obesity (body mass index of 40 kg/m2 or higher), obesity (body mass index of between 30 kg/m2 and 40 kg/m2)
        – Pregnancy
        – Sickle cell disease or thalassemia
        – Type 1 or 2 diabetes mellitus
        – Cerebrovascular disease (affects blood vessels and blood supply to the brain)
        – Neurologic conditions including but not limited to Alzheimer’s disease or dementia
        – Liver disease

        I believe people with CIDP or its variants would be covered under the Neurologic and Immunocompromised rules. But I live on the West Coast and have no first hand knowledge of how NYC is proceeding.

      • #117906
        ceekaydub
        Participant

        I was diagnosed with GBS in 1976 as a result of Flu Vaccine; have not had a flu shot since. Am still on the fence about COVID vaccine and have been vigilant about searching news pertaining to same. Ran across this medical article yesterday (2/21/2021): Neurological Complications of COVID-19:
        https://www.cureus.com/articles/52295-neurological-complications-of-covid-19-guillain-barre-syndrome-following-pfizer-covid-19-vaccine

      • #117907
        buckthorn
        Participant

        @ceekaydub Thanks for posting this. I was also diagnosed with GBS as a result of the flu vaccine (in 2019). I think this definitely bears watching. But by itself I don’t think it changes my own calculus about getting vaccinated. Several reasons come to mind. First, the article does not say much about whether they eliminated other possible causes, such as an infection. That leaves the causal relationship a bit tenuous (and it’s probably never 100% anyway), at least from where I sit. Second, even if the vaccine is a/the cause, it probably should not shock anyone. GBS is an autoimmune disease, and vaccines activate the immune system. One documented case is certainly evidence, but statistically it may not be significant. We already have reports (here) of GBS patients receiving the vaccine without incident. Third, there is still no evidence to indicate that the vaccine can cause a *relapse* of GBS.

        So yes, it’s a roll of the dice, but I’m hoping the odds are on my side. I’m seeing my primary next week and will ask about this, but I expect that he will have no special information and will likely leave the decision up to me. Of course this could all change if we get more data pointing one way or the other, but we don’t have much yet. That’s my $.02.

    • #117905
      Paul Buehler
      Participant

      Thanks Jim!

    • #117908
      Paul Buehler
      Participant

      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.

    • #117909
      Jim-LA
      Moderator

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

    • #117919
      Alin19buna
      Participant

      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

      • #117921
        Jim-LA
        Moderator

        Alin19buna, Thank you for posting in the proper forum thread and sharing your knowledge with us!

    • #117929
      Eric
      Participant

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

    • #117930
      Crusader66
      Participant

      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?

      • #117931
        Jim-LA
        Moderator

        VAERS is a passive reporting system, meaning it relies on individuals to send in reports of their experiences. Anyone can submit a report to VAERS, not just medical professionals. Consequently, VAERS can receive unverified information about adverse vaccine reactions.

        If I had access to view the reports that are in the VAERS database, I wouldn’t know which are valid or duplicates, or which were caused by something other than the vaccine being blamed. The data is unverified, unresearched, often anecdotal – and made immediately available to the public. Anti-vaccination groups can skew the results with false reports.

        I don’t put much faith in the accuracy of VAERS data.

      • #117934
        buckthorn
        Participant

        @Jim-LA, would you, or might the medical community more generally, view VAERS reports submitted by medical professionals differently from reports submitted by non-professionals?

      • #117935
        Jim-LA
        Moderator

        Dear Buckthorn, I don’t think all medical professionals know for sure what may have caused an attack of GBS/CIDP. Some have had no experience with the disease and have only read about it sometime in their past. Others jump to conclusions without knowing how to properly diagnose the disease or its probable triggers/causes. Plus, there is no VAERS validation process to keep anyone from masquerading as a medical professional and posting misinformation.

        If there was a way that VAERS could screen out the inexperienced reports and only show the proven medical experts who actually have hands on experience with GBS/CIDP, then the info could be useful. Until then, I won’t be trusting info reported in the VAERS database.

    • #117937
      Mattrc77
      Participant

      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?

    • #117942
      Jim-LA
      Moderator

      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.

    • #117945
      buckthorn
      Participant

      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.

    • #117979
      jon swanson
      Participant

      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……………

    • #117984
      Crusader66
      Participant

      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?

      • #118031
        ResearchingGBS
        Participant

        I’m going for antibody test this week but was told I should still get covid vaccine. I am waiting until I get antibody test first. I wanted to get J&J but now a little hesitant due to the recent problems. But will let you know what I do if test comes out positive. Am wondering if you already have antibodies, whether that combined with vaccine will provide you with too many antibodies and a more severe reaction. But dr. says it does not make a difference.

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