Myasthenia Gravis News Forums Forums COVID-19 and MG The Vaccine: Experience & Side Effects

  • lourdes

    June 16, 2022 at 10:38 pm

    Hello Everyone

    About this topic, in regard the Covid-19 vaccine, I have to tell you, after my 3rd dose of Pfizer in October 2021, I am experiencing an exacerbation on my MG symptoms. More fatigue,  heavy legs and arms. And a lot of double vision. I feel very weak. Right now I am taking 2500 Cellcept. And 60 mg of mestinon daily. Since, many years ago, I have not experience my MG condition so badly, as now. I went to visit my neurologist. I mentioned to him, that I suspected about the covid vaccine, probably increase the amount of the Ach antibodies in my system. But, he told me, there were not data about that. But, today I read about a study, who stated, Covid-19 vaccine do not lead to increase or worsen MG. Well, maybe they are right. But, in my case, I’m pretty sure is not like that. My ACch R binding Antibody test came out with a very high level result. (340.0) After all those results, My Dr. Suggested to me to try the new Vyvgart fusions treatment. So, I’m schedule to start  on July. One infusion per week. Total of 4.
    I hope, this will take me back, at the same way I was, before taking the vaccine shots. I want my energy and life back, pronto.

    • patricia-jacobs

      August 24, 2022 at 12:51 pm

      Lourdes, I hope you are well. How did you do with the Vyvgart? Any side effects? Did it help, and if so, which symptoms improved? I am supposed to try Vyvgart and am apprehensive. Thank you for any information!

      • lourdes

        August 24, 2022 at 3:35 pm

        Hi Patricia

        I have finished my first cycle of Vyvgart infusions (4). I didn’t have any side effects. But, for precautions, my Dr. ordered Tylenol, Benadryl, (tablets) and prednisone solution, into my IV. This was at the First one. But, because I didn’t show side effects, I decided not to have the prednisone on my following infusions. What I did was, to take, at home, before to arrive at the clinic, One Claritin, and one Diclofenac tablet (prescribed by my Dr’s before.) That was it.  In regard, on how I am doing after my infusions, I have to tell, I feel well, not so weak as I was. But, still I am taking my 2500mg of Cellcept. Also, I need to take 1 mestinon 60mg most of the time. Why? Because, I would get weak if I won’t take it. So, Mestinon is like a buster. As soon I take one pill, I can feel strong, and with energy to continue with my day. My Neurlogist told me, that with that combination, of medications (cellcept, Vyvgart, & mestinon) for now, is the best for me.
        Now, my Dr, is trying to see for how long, the Vyvgart effect will last. And to see also, if I can reduce or stop using Cellcept in the future. He said, that some patients experience longer times than others with Vyvgart effects. I will see him in 3 months. During this time I will know if I will need another round of Vygart.

        I hope this may help you to go forward with yours infusions. To me It’s worth it to try.
        Good Luck!

  • rubyzmomicloud-com

    June 16, 2022 at 11:16 pm

    So is 200 MG patients really enough to determine that it does NOT worsen MG or cause exacerbations? Afraid not in my case because it began that very evening after getting the very 1st vaccine. So call me a very rare case but don’t say it doesn’t happen or that it was from “XYZ”. I was doing very well that day and for months before that, then all my muscles started burning and I got weaker and weaker that evening until I had to go in the hospital for a week and get IVIG.

  • francisw

    June 18, 2022 at 12:42 pm

    I believe that my “vaccines” caused or triggered my MG.  Had difficult reactions after 2nd dose.  I don’t believe that these “vaccines” should be allowed to be called that.  You can still get Covid and you can still transmit Covid even after receiving 2 original and 2 booster shots.  Thus they don’t meet the definition of a vaccine.  They should be called a shot just like the way we refer to the Flu shot.  Plus you must sign a peace of paper acknowledging that these drugs are all experimental and thus give up any rights to compensation or accountability on the part of government and the drug companies.  Yet society is being forced to do this.   I question that “greater good”.  It is really just for their political cover.   Just follow the money.  So in the end my side effect is I have to live with MG because a grand experiment forced on us all.

    • barry-c

      June 18, 2022 at 8:33 pm

      Francis, 100% agree.  An experiment intended to cause an extreme immune response did exactly that, with the unintended consequence of also triggering an auto-immune disease…all so you can still catch and transmit Covid. Ironically I have Covid right now…and MG after 2nd shot last June.  Even bring it up to others and they look at you like you’re crazy and wearing a tinfoil hat, because the government narrative of “greater good” and “100 safe” has been so throughly believed.  I wouldn’t take it again and I won’t be getting boosted.

  • TheresaG

    June 18, 2022 at 2:43 pm

    My husband and I, I’m the seronegative mg , both just went through Covid.

    we had a week long mild case, highly attributed to having both vaccines and a booster.
    had we not, it is most likely we, especially me, could very likely have ended up in the hospital.

    It is due to fear, that we did not get the second booster. There are no guarantees in this world, but there is so much good and lives saved as a result of the vaccine. I’ll error on that side. The alternative of being put on a ventilator, having long term lung damage is not worth risking.
    All the medical people in my community including the health department said we were lucky to have had the vaccines as those that have not are the ones who end up in the hospital or morgue.

    it is fact that the vaccine will minimize the Covid effect.
    it is fact the ones dying from Covid are not vaccinated.

    even with our underlying medical conditions, the Covid was stopped from destroying us and the experience was like a chest cold.

    The government is in many ways corrupt, I’ll give you that, however, the government and all the medical researchers have done all they can to get to the point we are at now, where people are not dying waiting for a hospital bed.

    It has been an amazing accomplishment to be where we are at.

    in the end there will be plenty of research to know if any and what diseases were impacted or caused as a result of the vaccine, but just like those of us with antibodies that turned against us for who knows why, everyone reacts differently to everything that is put into us.

    the average unhealthy American diet is a greater risk in my opinion which people put in their bodies every day.

    • francisw

      June 18, 2022 at 7:26 pm

      I don’t agree with your opinion or your stated facts.

      Your facts omit some very important relevant details.  People have died from getting the “vaccine”.  People have died from Covid after being vaccinated.  The “vaccines” are not the only way to avoid Covid death.  No one with high (over 50 ng) of Vitamin D in blood stream has died from Covid.  There are and were many other choices that also worked with the same efficacy as the vaccines.  Over 90% of Covid deaths were elderly with pre-existing conditions.  Why is government scaring society into being stupid.  MNRA protein spike used in vaccines is according to one massive study in Sweden being attributed to causing DNA changes in people.   Why are we forcing large blocks of  very young children to get a “vaccine”.  Follow the money.

      Please don’t misunderstand me.  I respect your opinion and your right to be wrong.  Be healthy.  Be well.

    • barry-c

      June 18, 2022 at 8:33 pm

      Everything you say is true, for 98%…it’s the 2% of us where this gets uncomfortable to discuss…I’m convinced the mRNA vaccine caused my MG.  Or “triggered” if that makes it more comfortable, triggered something that may never have otherwise been triggered/activated.

      There will never be any truths revealed about side effects, can you even imagine?  The outrage and damage to future “just trust us” campaigns.  That will be buried in the deepest holes in our government so all us sheep continue to do as we’re told.

  • ann-marie-hetrick

    June 18, 2022 at 6:24 pm

    I will agree that they have not had enough MG patients to to determine that it does not worsen MG. I too had been under control for years and after receiving my second and third doses of  Pfizer had had extreme fatigue, muscle weakness, and blurred vision. I had to have IVIG treatments both times every day for 5 days to get me back to where I was. My ACchr binding antibody test came back very high also, 534. I am putting off getting the fourth booster till the fall. I do not like feeling crappy after the shot.

    • quentin

      August 26, 2022 at 2:18 pm

      I feel exactly the same. I had a normal life and 14 days after the vaccine everything changed forever. But yet according to my neurologist I am just unlucky. So they have not medically noted or reported any connection with the vaccine and my MG and ironically one of the reasons that they gave as to the vaccine not being a factor was that that were no other cases. Their flat refusal without any investigation to even consider the possibility that my MG was at least a catalyst rings alarm bells. I will never believe that the timing of this illness which came without warning was just a coincidence.

      • patricia-jacobs

        August 27, 2022 at 7:56 pm

        Quentin, Please relate your experience to the CDC. Have you heard of VAERS? It’s a reporting system. We all need to report ir they won’t know how prevalent this reaction is!
        People are getting MG and those of us with MG get Crises triggered.
        My life is turned upside down too.
        I now have a heart arrhythmia that might be causing breathing problems too. I can’t function any more, gasping for breath after just a few minutes of activity.
        My symptoms developed in 14 days too, after both vaccinations; J&J, then Pfizer.
        The respiratory therapist at the hospital now has a horrible case of rheumatoid arthritis and gies for infusions, and she’s seen patients with the same stories as ours.
        Please report! And best wishes…

      • patricia-jacobs

        August 27, 2022 at 7:58 pm

        Quentin, you might want to look into finding a neurologist with the help of MGFA. We all need doctors who know what MG is and how to treat it.

  • TheresaG

    June 18, 2022 at 7:52 pm

    Prednisone is one if the first line treatments for MG.

    it also is know to sometimes exacerbate symptoms. Generally temporary.

    IVIG caused negative symptoms for me, and others.

    anytime, anything we put something in our bodies it has the potential to cause a negative effect.

    ‘antivirals can exacerbate flu and or Covid symptoms.

    it’s all about the benefits that any vaccine or medication has to potentially make you better or protect you from a deadly virus.

    I just had my nurse put 2 bottles of VYVgart in me. I don’t know for fact that it might cause negative effects. Or long term, as it is new, they could discover that it has something bad in it. But for now, I feel the benefit, and I’ve experienced the benefit of being vaccinated as my Covid experience was not as bad as some flu’s I’ve had.

    we all have to judge hopefully with good advice from our medical team what is the best way to proceed, vaccines and or treatments.

    stay healthy.


  • patricia-jacobs

    August 23, 2022 at 4:20 pm

    I was diagnosed with MG in 2001; only some leg and shoulder weakness, occasional double vision. On Mestinon.Remission 2020; off Mestinon completely.
    Then got J&J vaccine 3/25/21; 4/06/21 in ICU for 9 days with Myasthenia Crisis.Never had breathing difficulties before. SOB continued. Hospitalized again 5/25/21- 6/11/21: Crisis, acute kidney failure, hemorrhaging, anemia. SOB continued, slight, slow improvement until Pfizer vaccine 12/14/21. Needed hospitalization within 2 weeks but declined due to high Covid in hospitals. Started 10mg prednisone, Mestinon 120mg 5x day. January hospitalization still advised; declined, prednisone upped to 15mg.Then 20mg. By 3/25/22, couldn’t speak after walking short distance, couldn’t sit up or walk at doctors office; directly admitted to hospital for 6 days, 2 in ICU. Currently on 30mg prednisone and 60mg Mestinon 5x day. Breathing is the major issue. Shoulders are weak but not a big deal; it’s being very SOB and having to sit after only 5 minutes of activity that is the problem and it’s not getting better.
    There are no doctors in my state who know how to treat MG; finally found one in Boston who said I’ve been under-treated. He has recommended Vyvgart.
    I’m always in the “only 2% of people get these reactions “ group and am allergic to so many meds. I am very apprehensive about trying Vyvgart and would like to know if anyone has experience with it, and if it helped breathing, and were there any adverse reactions?
    I am certain that the J&J vaccine triggered the breathing issues and crises.
    My doctor at the time agreed, even though there were no reports/studies suggesting this.
    Ironically, the hospital vaccination site set up a clinic to administer the shots to high-risk patients and they used J&J, the one with the lowest efficacy.
    I will never forgive myself for taking it, as I had done some research and decided the MRNa was the better choice. But when I got there and they had the J&J I let myself be talked into it. I don’t blame the medical staff; I blame myself.
    I am very concerned that the vaccine as a trigger for MG is not widely known.
    BUT: back to my questions about Vyvgart: anyone have any input? Thank you!

  • kenneth-j-bialkowski

    August 24, 2022 at 2:47 pm

    I have had 4 Moderna vaccinations. Slight flu-like symptoms the following day but nothing significant. Level of MG symptoms (speech, swallowing) did not change. MG has been controlled with 10 mg Prednisone daily and weekly Cuvitru infusions of 190 ml. for the last several years.

  • Deleted User

    Deleted User
    August 24, 2022 at 10:09 pm

    My mom (73) in Croatia got MG after 2nd Moderna shot. I think that vaccine triggered her MG. She is now afraid to take the booster. I understand her. The entire family got vaccinated without any side effects. Although, we are now all a little bit afraid of vaccines. But, what’s the alternative? Covid? Covid will probably worsen her MG very badly. I don’t know. Life is very complicated nowadays.

  • amyl

    August 26, 2022 at 4:11 am

    Please, anyone who had a bad reaction to the Covid shot, please report it to VAERS (Vaccine Adverse Event Reporting System). This is the only way that we can learn.
    The number of members being diagnosed with MG or having a bad reaction is alarming and researchers need to know.

  • marie-miller

    August 31, 2022 at 10:11 pm

    I am recently new to this group having been an active, healthy 69 year old woman who was diagnosed six weeks ago with MuSK MG.  I received my first vaccination in 2021.  It made me really sick for three days and ten days later I had what was referred to as “Covid arm” — hot red and sore.   With my second vaccine I also got really sick.  Ten days after that I started having double vision.  It would come and go.  It eventually abated, but then five months later  I got sick (tested neg with rapid test for Covid) and ten days after recovery my double vision reappeared.  It  would come and go from day to day but went away after several weeks.  I got the booster  a month after that and ten days later I had double vision.  this time it pretty much stuck.  After seeing several specialists, I finally got the diagnosis of ocular MG.  In my first visit to my neurologist  she found GMG with single fiber testing and subsequently MuSK with bloodwork.  My symptoms were mild, double vision (if you want to call that mild) voice changes, and a slight swallowing alteration.  I was put on pyridostigmine and then prednisone.  Off pyridostigmine (not good with prednisone)  now and hoping prednisone will help!

  • amyl

    August 31, 2022 at 11:15 pm

    I’m so sorry, Marie. Please report this to

    VAERS. Vaccine Adverse Reporting System.

    They need to know this is happening!

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