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    • #17081
      Jodi Enders
      Keymaster

      I did fine with both of my COVID-19 vaccine shots. However, I am also in my young twenties, with my MG relatively under control when I received them.

      Since moderating this forum for the past few months, I have encountered numerous individuals sharing their adverse reactions and MG flares after receiving the vaccine.

      It is crucial to remember each person’s unique factors and that everyone’s MG is so different with rare diseases. Thus it is difficult to make decisions based on others’ experiences who have the same illness.

      What are your thoughts on the COVID-19 vaccine booster shot? Will you be receiving it as soon as you can or have you already? Why are you leaning one way or the other?

    • #17092
      Carol Youngman
      Participant

      For me, I choose not to take the vaccine because of the continuous changes by WHO, NIH, FDA, CDC, and, of course, Fauci.

      • #17097
        Patricia DeMore
        Participant

        I got my first Pfizer shot in January and the second in February. Two weeks ago I got a booster shot of Pfizer vaccine. I am on CellCept and IVIG 2X monthly treatments. During all 3 injections, I had no reactions whatsoever. Just a Band-Aid and confirmation on my CDC card that showed I got it.

      • #17123
        Gilbert Brown
        Participant

        Hello Gil  here and I have had the 3rd shot which is really not as booster , it is just a vaccine shot like the other two. I have had mg for 5 years and was taking Cellcept and the Mestin did not help me at all . I thought I might be in Remission and about the time of the 2 vaccine I quit taking Cellcept and was fine for 5 months and now my upper legs hurt when i walk and shoulders hurt at times . When I first was diagnosed  with MG I had the normal problems like droop eye lids could not hold my head up and Swallowing was hard . My primary doc.gave me a referral to a  neurologist and it has been 2 or 3 moths and have not heard from the Doctor . Just wondering it MG can come back with different symptoms . Thanks for listing to all this and it is complicated . Thanks Gil

        • #17144
          Dev keshav
          Participant

          Hi Gil, I also thought I was in remission once. In the beginning, my right eye was drooping, plus swallowing difficulties etc. I stopped taking pyridostigmine, really happy with life. Then 2 months later my left eye drooped, and even after taking my meds still remained drooping. Anyhow a week later it was under control. I realize that snowflake disease is even with symptoms changing from time to time. Currently I’m having breathing difficulties, and use a nebulizer. I think it will improve, but I’m not holding my breath( have to laugh sometimes,)
          I wish you well. Take care Dev

    • #17093
      Barbara Goodheart
      Participant

      I had my third shot–Pfizer–five months after my second.  The soreness in my arm was quite minor–even a little less than I had with the first two shots.

    • #17100
      Charles Karcher
      Participant

      I got my booster shot 3 weeks ago today.  I had only a mildly sore arm for the first two shots and no reaction at all to the booster.

    • #17101
      Douglas F Young
      Participant

      PLEASE NOTE: THIS IS MY EXPERIENCE. IT IS NOT MEDICAL ADVICE.

      I had exactly zero side effects to either of my Pfizer vaccinations. Unfortunately I also had zero immune response, as indicated by a antibody test. I take cellcept, prednisone, and bimonthly Soliris infusions.

      Cellcept, Imuran and methotrexate are 3 immunosuppressants in common use that have been shown to suppress immune responses from other vaccinations. As far as I know they have not been tested against the covid 19 vaccine, but I highly suspect that my lack of response was due largely to my cellcept regimen.

      I took it upon myself to stop my cellcept for two weeks before and one week after my booster shot, and skipped one Soliris infusion. I am on a 10 mg dose of prednisone, which is supposedly unlikely to suppress an immune response.

      I got pretty sick the night of my vaccination, and a sore arm. That’s exactly what I hoped for. I will have another antibody test in a few weeks to see if I have some antibody response, but I think I will.

      So its fine to be concerned about side effects from the vaccine, but a hidden danger may be to have no effects at all. Don’t assume that you have some protection from the virus just because you got the vaccine, especially if you’re immunosuppressed. The booster may fail for the same reasons the series did.

      I will report back on my antibody test if anyone is intrested.

    • #17102
      Thomas Lee Clark
      Participant

      My last doc visit (every month for INR check for anti-coagulation, instructed me again not to get the flu shot and or the jab. I know those who have gotten the jab including my sister, nephew and 2 other older friends who clotted, stroked and died. My nephew was in his fifties, sis and friends were all older on anti-ags. All died within a month after the Jab. At my age and the severity of my MG, honestly I would rather die than have this MG come back. Even with the coumadin I still have clots.  Totally my choice. For me the jab is <b>tantamount to Russian roulette with one chamber empty.   I went to India without the malaria shot  because the quinine was more risk than the disease.</b>

    • #17106
      Amy Cessina
      Participant

      I’m getting the booster when I can. I do not take immunosuppressants so I’m not eligible at the moment. I did have some side effects long term with the shots but I still want to get it.
      BTW just to add to the above answer. I went to india with my husband  and took the Malaria pills.  About 10 days later I felt terrible weak and sick. I ended up collapsing and breaking 2 teeth. I almost ended up in a hospital in india which terrified me. The hotel sent a doctor to my room who was a pediatrician (who knows why) and told me I was hormonal lol. It was so sexist and dismissive of my condition. I’ll never go anywhere I have to take that medication. It took me about 2 months after getting home to get back to normal. I was a real mess. So us MGers really have to think about what we do.

    • #17115
      Dev keshav
      Participant

      I have had both shots of the vaccine, and am now waiting for our government to approve booster shots. My opinion is that some protection is better than none. Having survived covid and know how I suffered, I would hope that if I get it again, this would help to make it easier. In poorer countries, we accept whatever we are given. In my case it was the Sinovac. We are also used to mandatory vaccinations from birth.

    • #17109
      John Ulfelder
      Participant

      I received my initial Moderna vaccinations in January and February. I subsequently had IVig treatment for my MG (no particular improvement) followed by 7 plasmapharisis treatments (also no particular improvement). I was concerned that the treatments to reduce the MG anti-bodies may also have weakend the effects of the COVID-19 vaccine. I, therefore, went ahead and got my third Moderna vaccination (booster, same dosage as original shots) 2 weeks ago. Only effect was a sore arm for 3 days. Don’t know what my COVID-19 anti-body status is. The anti-body tests are notoriously inaccurate & misleading.Keeping my fingers crossed, wearing a mask ad maintaining appropriate physical distance when out.

    • #17125
      Ann Marie Hetrick
      Participant

      I had the pfizer vaccine in feb and march. I had a sore arm with the first and some tiredness more than usual. With the second shot I had a very sore arm that felt like someone was punching their way out. I also had severe muscle and joint aches for 2 days and increased weakness. It flared my MG up. I had been under control before the shots and then I started not to be able to focus and the muscle weakness got to the point I was having trouble walking. I had  IVIG treatments every day for 5 days and it did help get me back to my new normal as I call it.

      I saw my neurologist last week and she wants me to take the booster. I am scheduled for Sept 22 to have it. I am hoping I do not have the same problem. I will update when I get it. I am not looking forward to it as I am feeling pretty good mow.

      • #17130
        Douglas F Young
        Participant

        Wow, that’s really a Catch-22 situation for you. I sure hope your “booster” (I hear they’re emphasizing the booster label in favor of “3rd shot”) works out a lot better.

        PS. Maybe ask your Dr. to order an antibody test. I bet you’ll see good results

    • #17145
      Scott McCormack
      Participant

      My concern is that I am on 60mg of Prednisone daily which can reduce or eliminate my immune response from the vaccine. In addition, My MG had been in remission for about a year and only affected mouth, jaw and eyelids when I received my second Moderna shot in March. Two weeks later I was hit with severe weakness in most of my voluntary muscles except, thank goodness, my lungs and throat and still continues today. Was it related to the shot? Who knows. I am passing on the booster.

    • #17146
      David Seibert
      Participant

      Had my third shot yesterday.  Moderna.

      Also having no side effects except a sore spot at the injection site.  Both my docs., PCP and Neuro suggested I get this shot.

      I am on Imuran, Prednisdone, Melatonin and monthly IVIGs.  We tried to time the 3rd shot between my IVIGs.  I do not know how effective the shots are/were but am trying to keep my distance and wearing a mask.

      I am hopeful.

      Scott

       

    • #17147
      BBernadette
      Participant

      I am not eligible for a “booster” yet because I received the J&J vaccine.  However, my antibody levels have increased considerably in the 6 months since my vaccine, so I’m OK with not getting a booster yet.  I am on Cyclosporine, Mestinon and IVIG twice a month.

    • #17148
      Kelley
      Participant

      Had my 3rd Moderna 5 days ago. About 36 hours of a bad headache, mild nausea, chills, and joint/bone pain. (Imuran and prednisone) Slight increase in MG sxs. Since my neuro and PCP believe getting covid-19 would likely kill me, I got vaccinated. I’ve been wearing masks in public since before covid-19. I caught a cold that almost killed me. I’m not taking chances!

    • #17149
      Jennie Morris
      Participant

      I had Pfizer shots which completed the beginning of April. The first shot I ran a slight fever.  Second shot all I had was an extremely sore and red arm that lasted almost 3 weeks. I had IVIg then Rituxan treatments.  Rituxan is listed on the CDC site for diminishing the vaccine so I got the booster. All I had was a slight soreness for a couple of days. Did it work or not?  I have no idea.

    • #17153
      EDWARD CLAGHORN
      Participant

      I did have an adverse reaction from the two Pfizer jabs. My eyesight blurred and then I had double vision for a bit. The Dr. changed my meds and I did a 4 day IVIG instead of the normal 2 day. It took a few weeks to get things back to normal. I am still taking increased amount of prednisone as well as the CellCept. My third jab is set up for next week. More than worth the bother.

    • #17154
      Douglas F Young
      Participant

      Its good to see some people getting antibody responses despite being immunosuppressed. I sure didn’t. But this disease seems to treat everyone differently.

    • #17159
      Rich Michaud
      Participant

      I am totally confused as to how I stand with covid and vaccines. I have had MG for almost 20 years now. I am on imuran twice a day and never feel strong. (I am 74 years old now) Early in the epidemic my neuro said that if I got covid I would be in big trouble.
      Early December I tested positive for covid. I called my doctor and his only advice was to to to the hospital if I couldn’t breathe. I called a doctor friend 2000 miles away and he said I needed the monoclonal antibody. I asked my doctor for that and he said he hadn’t heard of it. I called my friend back and he got me a local appointment for the infusion the same day. I was 9 days into the covid and real sick. Next morning after the infusion I was way better and following day I felt cured. Because I had that infusion, I had to wait 90 days to get the vaccine. Since I had to wait 90 days, I got tested for the natural antibody and got a positive result. That was good news but since I only had covid for 10 days I was not sure as to the level of immunity I had. I finally got both Maderna vaccines in April and May. Both doses had me feeling like I had covid again for 2 days. I am still having weakness I didn’t have prior to my infection with covid. That may be after effects of covid infection or effects of the vaccine. I have heard of multiple cases of people who got no immunity from maderna while on imuran.
      So now I don’t know what to do about a third dose. It may be useless or may help. I am going to ask my doc to test me for immunity but I doubt he will let me get tested. In the meantime I am being extra careful (just as I was prior to getting covid the first time). I have heard that because I had strong illness after getting the vaccines that means I probably was making antibodies but with this covid, who knows?

      Rich

    • #17162
      Tom A
      Participant

      Two moderna vaccines without issue, booster two weeks ago without issue. I take cell cept and mestinon with minimal recurrences of MG symtoms – primarily speech. Was diagnosed 5 yrs ago.

      Univ of Texas is sponsoring free antibody tests for six months, every three months apart. My initial tests showed positive antibodies prior to booster.

       

      • #17273
        Leora Diana
        Participant

        Hi Tom. I also am doing the free antibody testing here in TX. After my booster my first antibody blood work showed >11 while my healthy husband showed >2500. This is all very interesting. Anxious to see what the next blood work shows in a couple months. Wishing you well.

    • #17166
      Jerry Trapp
      Participant

      I had my Moderna booster (3rd shot) 3 days ago and only experienced a slightly sore arm at the injection site.  I am 81 and am on Prednisone and Mestinon for generalized MG.  he first and second Moderna shots were excatly the same.

    • #17167
      John G Fay
      Participant

      Thanks for this great thread.

      I see my NeuroMuscular doc in 10 days.  This third vaccination will be my primary concern.

      I was diagnosed with MG in October 2019 (65 yrs old).  I had Covid in December 2020.  Mild case, headache, cough, fever, loss of taste and smell. Lasted 10 days.  I was taking 20mg of prednisone daily and 180 mg of Mestinon at the time.  January my doc started me on Azathioprine (increasing dosage every two weeks) until I had a severe allergic reaction in February (3 days in the hospital).

      5 days after I stopped taking it, I had my first Pfizer shot.  Second Pfizer shot end of March (on 20mg of prednisone and 180 mg mestinon). No side effects either time.  Not even a sore arm. I do not know if I have any antibodies.

      I started CellCept (1000mg daily) in May.  Most articles I have read regarding mycophenolate mofetil and the vaccine is that it inhibits a good immune response (@32%).  Some suggest going off for one or two weeks before and after.

      I am anxious to hear what my MG doc has to say and I will come back to this thread and let you know how it goes. Good luck with this everybody.

      • #17168
        Douglas F Young
        Participant

        Mycophenolate and azathioprine have similar suppressing qualities. I stopped my 2000mg cellcept two weeks before 3rd shot and got (finally) an unpleasant painful flu-like response after two fizzles following my 1st and 2nd. Antibody test in three weeks. I will share.

    • #17177
      Leora Diana
      Participant

      Hello. I had the Pfizer shots back in March and the Pfizer Booster a couple weeks ago. I am taking Mycophenolate and Mestinon  daily and have been since January 2016. I had my antibody count checked via blood work a day after my booster and I showed a count of 11 while my healthy husband showed >1400. Neither my neurologist or primary were surprised by the low count, but I was disappointed. My primary explained it this way.

      ”Unfortunately there is not enough data to be able to reliably say a certain titer level is associated with a certain level of immune protection. The immune system is more complex than antibody levels drawn at any given time. Your white blood cells store the memory of the antigen as well and become antibody factories once stimulated by a pathogen. This wouldn’t appear in a blood test”.

      Hopefully when I check again in 3 months, my count will be better. Feel like I am avoiding land mines every time I turn around with COVID and the ever changing information out there.

      • #17211
        EDWARD CLAGHORN
        Participant

        Thank you Leora – Very helpful and appreciated.

    • #17196
      John Stormer
      Participant

      I had the two Moderna shots in January and February.  Only a slightly sore arm with the second.  I only take 10 mg Prednisone every other day plus several pyridostigmine every day.  I was congratulating myself on tapering down to that low dose at -my last neuro appointment.  However, she pointed out that my immune system activity was probably diminishing due to age rather than MG remission (I will be 80 next month – diagnosed 14 years ago).  So, I hope to get a booster soon.

    • #17199
      Kelly Criezis
      Participant

      My husband just has ocular mg at this point. When we spoke to his neurologist a couple weeks ago he told my husband to get COVID booster as soon as possible. He had started prednisone (and is on mestinon) and I wasn’t really comfortable with him getting the booster so we tentatively decided to not get it and wait until after the prednisone to make a decision. He had another appointment as a check up with the neurologist this week and I expressed my concerns about the booster again; the neurologist said that previously they were recommending everyone get it but now because of the mixed messages from FDA and CDC they are recommending hold off. This is not a recommendation for any of you but just telling you what my husband’s neurologist said.  He is affiliated with Hackensack medical center in NJ.

    • #17203
      Peter Livingston
      Participant

      I had an MG flare after 2nd Moderna shot.   General weakness and difficulty breathing, swallowing, talking, droopy eye.   All the original pre Dx symptoms and pre thymectomy.  It all returned.   But, I kept thinking what if I had Covid and had a flare?    That outcome would likely have been worse.

      Ny neurologist started me on IVIG home infusion.  Immediate and dramatic improvement.

      on Sept 1 i got the booster.  No problems at all.  So in my mind I have covered myself as best as I can from severe Covid which could make MG severe.

    • #17209
      Jack VanWey
      Participant

      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.

    • #17212
      David E Falter
      Participant

      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.

      • #17270
        Carole Lawrence
        Participant

        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!

    • #17216
      Jacqueline Marquiz
      Participant

      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 :))

    • #17219
      Bob
      Participant

      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.

    • #17222
      CathyF
      Participant

      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.

       

    • #17213
      Andy Seles
      Participant

      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).

    • #17255
      Dave Haw
      Participant

      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!

      • #17265
        Dave Haw
        Participant

        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.

    • #17261
      Kevin J Funaro
      Participant

      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!

       

    • #17266
      Sharon Haw
      Participant

      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.

      • This reply was modified 22 hours, 48 minutes ago by Sharon Haw.
    • #17271
      Carole Lawrence
      Participant

      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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