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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.

        • #17365
          Debbie Butler
          Participant

          I had the Moderna shots in Jan and Feb and the third shot in the middle of August.  No problems with any of them … not even a sore arm.

        • #17370
          Douglas F Young
          Participant

          You might want to ask your doctor to order an antibody test. The lack of any reaction could be a sign that your body had no immune response. That’s what happened to me.

      • #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 7 months, 3 weeks 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!

    • #17268
      Donald Andelsman
      Participant

      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.

      • #17416
        Amy Cessina
        Participant

        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.

    • #17291
      EDWARD CLAGHORN
      Participant

      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.

    • #17312
      Lourdes
      Participant

      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.

      • This reply was modified 7 months, 2 weeks ago by Lourdes.
      • #17314
        Douglas F Young
        Participant

        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.

    • #17327
      John Gore
      Participant

      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.

    • #17335
      Neil Cowan
      Participant

      I am wondering if plasmapheresis treatment will negate my COVID-19 vaccine shots.

    • #17371
      Lourdes
      Participant

      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

    • #17377
      Douglas F Young
      Participant

      Good for you. Research, learn, and take control of your health. 

    • #17380
      Karinsue
      Participant

      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

    • #17407
      David Davidson
      Participant

      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

      • #17408
        Douglas F Young
        Participant

        Have you had your antibodies checked? Sometimes the lack of any reaction can be a warning sign.

    • #17420
      Robert Stephens
      Participant

      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.

    • #17403
      Jim Hinnant
      Participant

      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.

    • #17433
      Rick Federmann
      Participant

      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.

       

    • #17437
      Jack Stayton
      Participant

      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.

      • #17441
        Douglas F Young
        Participant

        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.

    • #17438
      David Seibert
      Participant

      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,
      Scott

      • #17439
        Jack Stayton
        Participant

        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.

    • #17440
      David Seibert
      Participant

      Hi Jack –

      All of my medical needs are provided by the VA and includes eyeglasses and hearing aids.

      We moved to Houston, primarally, due to the medical support here.

      I also have a PCP under Medicare. He is aware of what is going on and is ready to refer me to a MG specialist not with the VA. My VA Neuro primarally treats ALS and MG.

      My tour in Viet Nam and ear damage makes me a Disabled Veteran and helped with my Priority level.

      You might consider contacting the VA to determine eligibility. This won’t help you today or even this month but, if available, … it doesn’t hurt to look into it. You might be surprised.

      Scott

    • #17447
      Amy Cessina
      Participant

      I scheduled my booster for November 1. I had to wait because my son brought home a viral illness from high school and spread it around the house including me. Funny everyone wore mask etc inside but it didn’t matter we are all sick. It’s Not Covid we got tested. But kids back in school after a year and a half means mega spread of viral illnesses.  Hopefully my booster will go well and then two weeks later I’m getting flu shot.

      David S your post caught my attention. I think Vietnam vets have higher incidence of  MG due to chemical exposures over there. Did any neurologist ever ask you about that? Just curious. I had chemical exposure where I grew up. Soil was contaminated years later they dug up all the leaky barrels of chemicals and cleaned it up but too late for those of us who played in that soil as children.

    • #17453
      Rich Michaud
      Participant

      Amy, that is interesting. Maybe there should be a new thread on this subject. I have always been wondering about chemical exposure and MG.  I was diagnosed with ocular MG shortly after I did some fiberglass work on my boat. (almost 20 years ago). A few years later, I did fiberglass work on another boat and shortly after, I was diagnosed with generalized MG. Both times I probably inhaled fiberglass dust and vapors of acetone. I had fiberglass dust all over my body. Rich

    • #17454
      David Seibert
      Participant

      Hi Amy –

      Not to Hijack this thread –

      There does not seem to be any connection that the VA recognizes between chemical exposure in VietNam and MG.  Only recently has the VA approved Parkinson’s as coming from toxic exposure in VietNam.

      When I was first aware of MG before I was diagnosed, I started looking into this and could never find a connection.  Lots of questions but no connection.  I even researched settled law suits that tried to prove that there is a connection.  Unfortunately none of the suits settled could establish that connection.  Maybe some day.

      Regarding Riches comment – Lord only knows how this thing got into us and from where.  🙂

      Scott

       

      • #17455
        Carole Lawrence
        Participant

        Thank you Scott. I have often wondered about that myself re a chemical exposure possibly causing MG. When I was walking in my high school grounds in the late 1950’s here in Australia, a crop dusting plane that had become disoriented accidentally sprayed me with DDT! I was covered in it from head to toe! I later asked my Neurologist when he asked me had anything strange happen to me when I was growing up and at what age did I first notice MG symptoms. When I told him that I had been sprayed with DDT at 15 years old and that was about when I first noticed strange symptoms that had no explanation – such as suddenly collapsing after a foot race and being unable move or stand up or to see properly due to double vision, he immediately dismissed it as not having anything at all to do with me developing MG. At the same time that I was sprayed with DDT so were other locals in my small country town and 9 months later three women gave birth to grotesquely deformed babies who died! The Government when contacted about the 3 birth deformities 9 months after the 3 mothers had been accidentally sprayed with DDT said it was just a coincidence! I really do hope that more research goes into this possibility of exposure to chemicals being at least one cause of MG.

         

    • #17485
      Amy Cessina
      Participant

      <p style=”text-align: left;”>We should start a new thread on this topic. I’ve thought chemical exposures can trigger autoimmune. Agent orange exposure in Vietnam vets  I thought maybe was trigger. My exposure was heavy metal and I know that can trigger autoimmune. I have two autoimmune conditions.</p>

    • #17623
      Bill Johnson
      Participant

      Received the two (2) Moderna shots in early 2021, then received my usual rituximab infusion in May (get Rituxan every 6 months).  Unfortunately, the rituximab inhibited the creation of any antibodies (confirmed by serum antibody test).  Unfortunately, I contracted COVID-19 in the fall, but was fortunate enough to have started monoclonal antibody treatment very early in the course of the disease.  I’m not sure if I would be writing this if I didn’t get the monoclonal antibodies.  Anyway, my physician says that a booster would be a waste of a shot since I will receive Rituxan in a couple of weeks.

    • #17626
      Douglas F Young
      Participant

      Its reassuring that the MAB helped you even with your immunosuppression.

      I tweaked my immunosuppressants before my booster and finally got some positive results. Nothing at all from the first two shots.

      • #17661
        Russell Wonson
        Participant

        Does anyone know yet, if you “tweak” your immunosuppresants and then get the booster do the good positive numbers stay with you or go away once you return to the immunosuppressants?

        • #17662
          Douglas F Young
          Participant

          Good question, and not likely to be answered soon. We don’t even know for sure how well the antibody numbers correlate to immunity. The antibodies are waiting around to notify the immune system that known pathogens have been detected, but maybe with immunosuppressed people there’s no one waiting to do anything with that information.

    • #17635
      Michael Van Alstyne
      Participant

      Received 3rd Pfizer shot Nov. 10. I don’t think the MG was affected, but now on the 12th I feel lethargic. Just have no interest in doing anything -could be the weather or old age. Flu shot is next, but have to wait to schedule between IVIG treatments.BTW my arm was really sore after the shot for a couple of days, but I think the nurse put the needle in too high.

    • #17656
      Russell Wonson
      Participant

      Got my 1st Moderna shot on February 26th, 2nd shot on March 26th with only a slightly sore arm on both. No other issues with either of them. On August 15th I got my booster and had a very sore arm and the next day had a slight fever. Then nothing after that. I have been on mycophenolate 1000mg AM and 1000mg PM only for over 2 years, and have heard of others who have been on a low dose of prednisone who have been tested and had high antibody results. Has anyone taken the antibody test who is/was on mycophenolate, at the time, and what were their results like?

      • #17659
        Douglas F Young
        Participant

        I had Pfizer shots in Jan-Feb this year. Antibody tests came back negative. I was on 2000mg of mycophenolate at the time. I stopped the mycophenolate for two weeks before the booster and got positive results. I am also on 10mg prednisone which I left alone.

    • #17668
      Bill Wheeler
      Participant

      Third Pfizer shot, no problems, also received quadravalent high dose Flu shot, felt a bit “off” for a day or so. Very thankful.

    • #17690
      Amy Cessina
      Participant

      I finally had my booster after cvs cancelling on me twice. I finally went to my health department clinic. I’m having a few minor side effects the next day but will keep an eye out for anything bad. Drank all the water like I was asked to. Not sure if it did anything but figured it couldn’t hurt.

    • #17996
      Alan
      Participant

      Hi, my mother (72) developed MG a few days after the 2nd dose of Moderna in April 2020. Omg, 4 months she hasn’t been able to eat, swallow and to speak properly + diplopia. Also, she permanently lost vision in one eye (after the 1st doze) and she still feel a some sort of dizziness. No one knew what was wrong with her. We’ve visited more than 10 doctors and spent €1000. Finally, anti Achr was 8 (eight) and then MG has been confirmed in September 2020. Now she is afraid to receive the 3rd dose. Daily medicine: Mestinon 3x60mg and 30mg of Prednisone. Still feels very tired/weak but she can eat properly. Diplopia is resolved but one eye is still very blurry. Other family members including me were vaccinated 3x with Pfizer without any problems (so far).

    • #18010
      Ms.Will
      Participant

      I was diagnosed with MG about four years ago.  I was on Muran for two years and have been on Mestinon the whole time.  I finally received the ok from my doctors in the fall that getting the vaccine and possible side effects were a better issue than not having a vaccine and catching COVID.

      I received my first Moderna dose in September and only had a sore arm for a few days.  My second one gave me aches,  chills, and a headache.  I was very fatigued. This lasted for a day.

      My 3 dose, in anticipation of feeling like crud, surprised me and it wasn’t as severe as the second.

      I am glad my doctors delayed giving me a decision right away because I wasn’t comfortable in getting it since there wasnt enough literature for the effects of MG patients in the beginning.

      I think the side effects really depend on how MG processes in the individual.

    • #18802
      Sandra Davis
      Participant

      I aam treated with plasma exchanges, only right now. I was doing well enough to start aquatherapy, until the vaccine. I had 2 doses of Moderna, and the booster, with no pain,
      but now have severe dysphagia and double vision. However, have been spared the covid illness. I guess it’s a trade-off. I would do it again, though.

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