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COVID-19 Vaccine Booster Shot and Myasthenia Gravis
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My story is completely different than most, I had COVID before it was officially named in JANUARY 2020. I experienced my first symptoms of MG during the final days of my recovery from COVID. I was diagnosed with MG 6 months later after my symptoms had become much more severe. I have not and will not take the vaccine. I have been exposed the the virus several times since I originally recovered and have not come down with COVID. My MG is under control at this time with only the occasional flare, usually do to excessive heat and over exercise. I have been advised by several people in the medical field , including my doctor, not to take the vaccine.
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When I turned 78, I received my first diagnosis of MG in August 2017. It took several years to settle down to three Mestinon per day with a 10 mg dose of prednisone every other day. In December 2019 my wife came down with a serious case of C-Diff and was quite ill myself going into the new year. I came down with something that was never diagnosed about the time the Covid virus started up big-time in our state. I should have been tested as my symptoms were off the charts.
When I felt better, I went ahead and received my Moderna shots in January and February 2021 with just some arm soreness for a few days. I received a Moderna third shot September 1st with very few symptoms.
Now that I’m 82 years old, I am following all of the protocols of masking indoors, staying out of crowds, pretty much living in my home and home office with my wife and ordering necessities online for home delivery. We both take zinc, vitamin D3, C, L-Lysine and multi-vitamins. The upshot of all this is we haven’t gotten sick or catch any other bugs since early 2020. If I forget to take an occasional Mestinon I may get some throat tightening when I swallow clear liquids.
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I take motilium tablets 10 mg [domperidone] three times a day about 15 minutes before eating. It helps me to swallow, but I must admit that sometimes [usually when I am feeling tired] they don’t always help and I have to spit out whatever is I my mouth into a napkin, then wait a bit longer and start to eat again. If I am out with others I have to leave the room to save them embarrassment, spit up in a sink, wash it out then wipe my mouth and then come back. My GP said I should try not eating for 1/2 an hour after taking the motilium tablet and it usually works. I just thought you could mention the motilium tablets to your GP for his/her advise as to whether to take them [they are on prescription only]. I have been diagnosed with Myasthenia Gravis for 48 years! A very long time indeed and I have had many episodes with it along the way, but I am 77 years old now and managing fairly well with MG, asthma, osteoporosis and osteoarthritis, plus I had a hip replacement last year with an Orthopedic doctor who dealt in ‘difficult’ patients and my Anesthetist specialized in treating rare patients as well and all worked out fine!
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I’ve not gotten any of the vaccines and have no intention of getting them.. there’s just too many unknowns for me. I am three years post thymectomy and six years living with MG. I’m generally healthy and on 40 mg dose of prednisone and or a Mestinon. I work out every day and eat well. I think the risk outweighs the benefit for me:)) wishing you all good health :))
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I have always taken my annual flu shot and really never gave it a thought, rarely ever had flu symptoms in my 70 years.
I also have taken all 3 Madernia shots. For myself only, with MG and age feel I made the right decision and did not have issues, not even a sore arm. Just felt MG issues and Covid could be a very bad combination for me.
My decisions are usually made on risk to me. Look at the facts as I see them and the consequences to me.
Do feel it is each person’s choice what they do.
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My husband was diagnosed with mg 2 and 1/2 years ago, an arduous process that took 9 months to finally have an answer to what was happening. It took a mg crises while in the hospital to determine the cause of his inability to chew, swallow, or speak. We both had the Moderna vaccine last February. My husband had a scary reaction to the 2nd shot, fever and tiredness. The reaction only lasted 24 hours. Currently he is in remission and we do not want to disturb anything with a booster shot at this time.
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I was diagnosed with MG a year and a half ago. I take mestinon and get Soliris infusions every other week. I was able to delay the infusions for ten days on either side of my first two Pfizer shots. Because I was away from home I got my booster after a 5 week hiatus from Soliris. I had no reaction, zero, nada from any of my shots. Is that a bad sign?…maybe, maybe not, as Leora said, “The immune system is more complex than antibody levels drawn at any given time.” There is some growing evidence that surviving Covid may grant better immunity than the vaccines, however, at the age of 74 and immunocompromised, I’m sure not taking that chance since MG is strike one against my lungs. I also wear a mask on the rare shopping trip, do not socialize indoors and keep social distance outdoors (and, then, only with two or three people). QUESTION FOR THOSE TAKING SOLIRIS: Are you also taking a daily antibiotic? One neurologist told me that, even after taking the vaccines for meningitis, I would still be in danger of contracting the disease unless I was on antibiotics…not eager to do that! My heart goes out to all of you coping with this snowflake disease; the journey can be lonely at times but please know you are not alone (thank you Jodi for creating this community).
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Pro-vax here. February & March 2021, 3rd shot August 2021. Mild reactions to all 3, sore arm 1 week all 3 shots. I had the antibody test and it came out >150.00. During this process i was on pyridostigmine er 180mg, cellcept 500mgx2 2x daily. I live with 2 healthcare workers who risk exposure at work. So i will wear a mask in the car with them or if they have been in an environment that is higher risk. Fortunately infection spread is slowing in our county. Be safe!
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Follow-up: i got the hi-dose flu shot yesterday with mild arm soreness yesterday only. I will update if there are any side effects.
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Received my Pfizer booster yesterday at the neurologists office and so far just a little soarness in arm. But I am very tired. After reading the other posts I hope it doesn’t trigger something worse. I can’t remember the what the time frame was with the onset of MG symptoms and the first vaccinations to know that had anything to do with it. But I am going to check on my records!
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Pfizer 1&2 in March/April, 3rd dose Sep.22. My neurologist doesn’t recommend stopping Cellcept but I reduced the Cellcept by 1/4 for a week before &after for first 2 jabs, had no reaction after first, & very mild tiredness/chills for second. I read a Johns Hopkins study that included Cellcept & dosage reduction was done before & after jabs. Too small a study to be conclusive. But I reduced Cellcept dose by 3/4 two days before third jab & it will stay there for 2 weeks. Greater fatigue, chills & soreness on day following 3rd jab. Lasted 24 hours. Really mild reaction on second day. Mostly chills no fever. Hope the stronger reaction translates into antibodies this time.
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My Neurologist here in Australia wants me to wait until Novavax vaccine is approved in Australia as he does not want me to having AZ, Pfizer or Moderna, as he said he has researched all the available Covid vaccines in Australia at present and only the Novavax vaccines ticks all the boxes for safety for a Myasthenic according to him – so it’s a waiting game for me as it is not scheduled to be approved for use here in Australia until November!
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I had 2 Moderna shots in February at the VA. I has flu-like symptoms with a low fever after the 2nd shot…lasted 1 day. Last month I had a 3rd Moderna shot and was quite sick with a fever for 4 days. I haven’t heard of anyone having it that long. I have a somewhat mild MG, both ocular and general. I don’t know if my MG is related to the after affects. I had to stop Mestonin because of bathroom issues and am not on any MG medication at the present. I am still looking for the right neurologist that can prescribe something for me. I live in the Long Island section of New York.
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I live in New Jersey and go to New York Presbyterian neurology. I think they are really great and highly rated neurology practice. They won’t force medication on you if you don’t need it. They have virtual appts too but I feel very safe going there in person. I seem to have similar symptoms to you and mild disease. They have so many MG patients they really understand the disease and the treatment of it.
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I received my third Pfizer shot 14 days ago and my reaction to it was much milder than after the first two. I timed it exactly between my monthly 2-day infusions. I am still on Cellcept and an increased dose of prednisone since the first reaction to the vaccine shots. Hoping that this is a good sign and I hope to drop back on the extra meds.
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I will have my 3rd dose next week on Oct. 7 after 6 months of my 2 Pfizer vaccines. I did have side effects like fever and body ache, after my second dose. So, I’m expecting the same during my 3rd. I will let you all to know. I started, to reduce my CellCept med to give a chance to my system to build up a response for the COVID 19 vaccine. I usually takes 2500 mg daily. Last week I started 1500 mg. This week 1000mg until next week I will stop. Then, after my booster, I will wait 7 days to start my medication again. In case I need to control my MG condition I can take Mestinon as need. A good thing is I am at home retired. My input in regard of getting or not the COVID 19 vaccine is simple, Go ahead, give Science a chance.
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That’s what I did for my 3rd shot since I had no immune response to the first two shots. I took 2 weeks off cellcept before the shot and a week after. I got a modest response (>20), but better than nothing.
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Just like some of you, my doc said I should get the booster. I did and initially no problems. Then a few days latter started to cough a little.
Family got tested for Covid so decided to join and get tested myself. My test was positive! So after full vaccine (Moderna) and booster I still got it. Luckily my case was very mild and actually felt good for most of the isolation period. All is good now except for the MG problems now and then. Rest of family ok.
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I am wondering if plasmapheresis treatment will negate my COVID-19 vaccine shots.
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Hello Everyone.
I had my 3rd dose yesterday. Yes, I have the reaction as the 2 previos vaccine as well. Body ache, some fever and headache. Tylenol is helping. Also, I am weak. Hopefully, tomorrow I will start to feel fine. But, the best of all is, I am better protected in case I got sick with the virus. I will wait at least, 1 more week to start the CellCept.
Good luck everybody -
Good for you. Research, learn, and take control of your health.
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There is no way that I will take the booster shot, and both my neurologist and my ophthalmologist agree with me. I was diagnosed with ocular mg in 2012 and I take mestinon 4x daily, and everything was under control until I had the 2 doses of the Pfizer vaccine in Feb. and March of 2021. The vaccine effected my vision and my balance. I have fallen many times because of my balance problem. My neurological ophthalmologist says that my body and vision will not tolerate the booster shot and that I am smart for not wanting it. My quality of life has diminished because of the way the vaccines effected me. I do stay in my home the majority of the time because I am afraid to be exposed to Covid, but I did this for the year before I got the vaccine and my main problem was boredom, not poor vision and balancing. I will not play Russian Roulette by taking any more shots.
from Karinsue Caraway
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I have had same experience with eyes and balance after second booster in late September 2022. Still struggling with blurred vision, double vision, ptosis in both eyes, very dry and puffy/swollen eyes. Have ocular MG but these are the worst symptoms since initial diagnosis in 2004. Sorry you are struggling. I hope things have improved for you.
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I have had all 3 moderna vaccines with no reaction . I get a soloris infusion every 2 weeks & IVIG every 2weeks. I also take 3-4 180mg SR mestinon daily + 10mg prednisone daily.
Good luck
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Have you had your antibodies checked? Sometimes the lack of any reaction can be a warning sign.
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I had all 3 moderne shots with no problem except a sore arm on the 3rd. Much more relaxed now, knowing I did my part in nipping this pandemic on the bud. Still wearing a mask in public since there are still too many yahoos who are disregarding science.
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Received 1st Phizer shot 3 months ago…sore arm and a boost of energy about an hour or so later. My mom who is 91, noticed that same energy boost. Soreness went away about 24 hours later. 2nd Shot was a few weeks later…sore arm…and really run-down feeling starting about 24 hours later. That feeling went away after another 24 hours. I’m only on pyridostigmine. I’ll probably get the booster when my wait time is reached depending on what’s happening with COVID-19 at the time.
I don’t make anything with COVID-19 political and stay away from all non-productive conversations worying about WHO, CDC, or Fauci.
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I take Mycophenolate (CellCept) and had two Pfizer doses. I read online posts, including in this forum, that questioned whether the vaccines were able to create antibodies in the presence of CellCept.
I asked my neurologist whether I should get an antibody test. She said that the tests are mostly useful, but have some margin of error, which could send me in an erroneous direction. The real question was what would I do if the antibody test was negative? Would I trust the negative result and go unvaccinated, and be completely unprotected? Or would I understand that the test is sometimes incorrect and get vaccinated anyway, so that I don’t miss the potential opportunity to be protected? In other words, would I ensure that I’m not protected, or take the risk that it works? Her recommendation: skip the antibody test and get the booster.
Later, I had a salmonella poisoning incident that resulted in an EMS/ER experience and a near-death myasthenic crisis. While I was in the hospital I asked their staff neurologist the same question. Her response was exactly the same: skip the antibody test and get the booster.
Last week, I got the booster. I rarely have reactions to vaccines, and had zero reaction to the first two Pfizer doses. This time, I had flu-like symptoms the next day. I was genuinely happy about that! I would not have had such a strong reaction if my immune system hadn’t reacted to the stuff in the booster. In other words, it confirmed that I do have antibodies and that they are on the job. It really boosted my confidence that I am truly vaccinated.
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I was diagnosed about 3 years ago after having double vision while driving on a long trip. I was immediately put on Mestinon 4 per day and referred to an MG specialty neurologist. She started me on Prednisone and gradually increased it to 60mg. That caused me to become diabetic (Type II) and put me in the ER when unknowingly my glucose hit 565. That caused her to back me off the Prednisone over a couple of months and put me on Cellcept, 500mg 4 per day along with the Mestinon. My glucose is now under control and I no longer take insulin.
I’m now with my in-network neurologist after the MG specialist closed her practice. He has made no changes to my medication nor given any advice on Covid shots until recently. I got my Moderna shots in March this year and am waiting for Moderna to announce a booster.
Based on the comments in this forum, I asked my neurologist if I should stop taking Cellcept for awhile after getting the booster. He replied he didn’t think I should get the booster and NOT to stop the Cellcept. I’m at a loss to know what to do.
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Jack, this is really uncharted territory, but we know some things. 1 1/2% of the population is immunosuppressed, but as of August 1 accounted for 46% of the so-called breakthrough cases. Looking at Colin Powell, we see how dangerous covid is to people with immune issues, either as a result of disease or as a result of induced immunodeficiency to treat autoimmune mediated diseases.
I got nothing from the 1st two Pfizer shots, based on blood tests. Looking at the available information, I concluded it was my immunosuppressants (Cellcept, prednisone and Soliris) that inhibited my response, and when the 3rd shot became available, I discontinued my cellcept and delayed my Soliris pending and following my “booster.” I finally got a response, though a modest one.
I hadn’t told my neuro of my intentions, but she reluctantly conceded it was probably a good thing for me to have done. I am currently working to find a way to get a 4th shot, because a don’t believe the 1st two counted at all.
I am not recommending this to anyone. I have a well-controlled case of MG, and have been stable on my current meds for several years. But I am 75 years old with elevated blood sugar and I am worried about covid much more than I am about a three week break from my meds. (I continue to take Mestinon though, because it is not an immunosuppressant, and I need it.)
I do agree that you need a Dr. who understands your disease, someone who is educated and open-minded. Covid is here to stay.
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I might suggest you – do what you think is right – and maybe find another MG Doc. Tout de suite. Be steady.
I timed my 3rd shot halfway between my IVIGs *every 4 weeks). I continued on my Imuran, Prednisdone, Mestinon. Did not feel any discomfort and have not requested a test to verify immunity. The percentage of efficacy is not important to me. We are being quite cautious and always wear masks when around people. Any assistance from the shots are appreciated. My Neuro said that there is nothing in the vaccine that would kill me. He also said that there are not enough people like us, with MG, that have gone through this to be able to tell us how much of what we should take to not harm our selves.
I think different people think different things about whether or when to take this shot.
I think many have had it, so it might be expected, to have a variety of responses. To my eye, as warped as it is, NOT many have had bad feelings after their 3rd shot.
Good luck and good health,
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Thanks David. I think I will get the booster and would like to get another MG specialist. However it seems this one is the only one within network. I am going to check with the VA. I know they have neurologists but don’t know yet any of their specialties. I’m stymied why my doc doesn’t want me to get the booster. But he doesn’t monitor my condition at all. I haven’t seen him in over a year. I see his assistant, a pharmacist, more. She scheduled me for an IVIG earlier this year and then my insurance refused to pay for it. I don’t understand that.
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