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    • #16161
      Michelle Gonzaba
      Participant

      I recently received my second dose of the Pfizer vaccine. As someone who always assumes the worst, I thought the process would be a mess. I was pleasantly surprised to see that the vaccine site was very organized and everyone was patient. It was also great because I didn’t have to leave my car to get either shot.

      After my first shot, I had a very sore arm but no other side effects. After my second, I had a sore arm plus some flu-like side effects. Luckily, nothing lasted more than 24 hours.

      What was it like when you got your vaccine? What was the process like? Did you have any side effects?

    • #16178
      Jodi Enders
      Keymaster

      I also recently received my second Pfizer vaccine, and I wish I didn’t plan to do absolutely anything the following few days. The process for both was smooth and I had side effects from neither except a pretty gnarly bruise that lasted a month after the first.

      • #16892
        Delores Gstling
        Participant

        I had no side effects from either shut no sore arm no fever no anything did not affect me at all

        Delores Gatling

        • #16902
          Pamela
          Participant

          I’ve had gMG for 11 years. I had my J&J in April. That night I had burning muscles all night. I had never experienced anything like this ever and it was painful. I began getting weaker despite my regular meds and began taking 20 mg Prednisone to try and alleviate the side effects.  I kept getting weaker every day and couldn’t walk, hold my head up etc. I contacted my Neurologist and went to ER. I was in the hospital for 1 week on O2 and IVIG. I was much better after this but have been more sickly since (ie, had 2 colds) will NOT be getting a booster shot!

        • #17241
          Marguerite Thibeau
          Participant

          Thank you for sharing. I have MCS as well as MG, and am very concerned as every vax has made me sicker. I’m meeting with an Infectious Disease specialist tomorrow to discuss.

      • #16932
        Lisa Blutman
        Participant

        I have had 3 Pfizer shots.  My arm, neck and back were sore with tiredness for my second.  6 months later I had my third with arm soreness and tiredness only for my third.

        • #17002
          Jacqueline Marquiz
          Participant

          I have not gotten the vaccine and this is precisely why. It’s not been around long enough for me to run out and get it. People judge, but it’s my body. I’m not harming anybody else by not getting vaxed. Praying that you feel better soon. 🙏🏼☺️

    • #16535
      Deborah Whited
      Participant

      Hello, I received my 2 shots in March 2021.  The 1st shot I was sick for 2 days and the 2nd shot I was sick for 4 days.  It felt like the virus all over again.  I had Covid-19 in January and was sick for 6 weeks.  I went into the hospital for 5 days.  I lost 15 lbs.  My husband received his shots in March also.  They didn’t bother him except for a sore arm.  He’s always been the healthy one.  He started having problems in June. He would choke a lot had trouble chewing and swallowing.  He lost 25 lbs in 2 weeks.  I finally got him into a doctor and he sent us to the emergency room.  They ran a lot of tests and kept him for a week on IV.  Still couldn’t eat.  They thought it was ALS.  He got to come home with a feeding peg.  I feed him 5-6 times a day.  We went to a neurologist and he felt it was Myasthenia Gravis.  Did the blood work and that’s what it is.  I believe and will never change my mind that this is because of the Covid 19 shots.  He went from very, very healthy to having this damn disease.

      • #16870
        Amy Cessina
        Participant

        I can believe the vaccine was the trigger for it.  I keep hearing that many MGers have had pretty bad flare ups from it. I haven’t been right since and hope I get back on track soon.

        • #16889
          Samara
          Participant

          Hi Deborah.  It sounds like you and your husband are going through a really rough time, and the pandemic is making it even more confusing and scary.  Your husband’s symptoms sound a lot like what mine were like in the beginning.  Just know that it gets much better once you know what’s causing it.  I was diagnosed in 2007.  The first 6 months were the hardest, and then the treatments started to work and I gradually got back to living my life.  It hasn’t been perfect, but the treatments have been good enough to keep MG symptoms to a minimum.

          I’ve never heard of a vaccine causing MG.  I don’t think anyone knows what causes it. But I can see how the timing of your husband’s symptoms would make you suspicious.  I’ve long believed that extreme stress that I was going through in 2007 was the trigger that made my body go haywire.  But autoimmune conditions run in my family, so my guess is that it was just a matter of time until I got MG anyway.

          I hope your husband starts to feel better soon.

        • #16893
          Joseph Betts
          Participant

          Hi Samara, I was also diagnosed with MG in 2007. You mentioned that treatments are helping keep your symptoms to a minimum. Would you mind sharing what treatments you are receiving? Thanks for any advice.

        • #16949
          Samara
          Participant

          Hi Joseph.  For me, it has been a gradual process.  In the beginning, I had a thymectomy and took high dose Prednisone.  That stabilized me but was not a long term solution because of the side effects.  Then, for a number of years, I was on both IVIG and azathioprine.  Eventually, I upped the dose of azathioprine and was able to stop the IVIG.  Now, I’m back down to a lower dose of azathioprine + mestinon as needed.  It’s working for now.

        • #16953
          Joseph Betts
          Participant

          Samara, thanks for sharing!

        • #17004
          Jacqueline Marquiz
          Participant

          I’m so sorry to hear about your husband. This is why people shouldn’t be running out and getting a vaccine that hasn’t been in existence for more than 18 months. There’s not enough history. I’m not an anti-VAXer, but I haven’t received the vaccine yet as there is a lot of medication to help with COVID-19.  I’ve myasthenia gravis for six years and I am three years post thymectomy. I take my health very seriously and I’m at the gym every day. I’m not a fan of medication but have to take it for both MG and Hashimoto’s. I’m starting prednisone tomorrow for two weeks as my muscles are rapidly wasting. I was tested for LEMs MG but they came back negative. Good luck, fellow  MGers. Stay safe

        • #17685
          Mike Anderson
          Participant

          Hi, I hope things are better. I got moderna after my second shot in April by June I woke up unable to speak properly then developed swallowing difficulty. This week after over 5 months of mri’s ct scans numerous doctors I was diagnosed with MG. My symptoms are not as severe but My neuro just stared me on mestinon and prednisone. I have been referred to tha Mayo Clinic. I was healthy active and never had issues like this before. I hope your husband recovers and more research is done

        • #17703
          Diane
          Participant

          Hi Deborah, Mike and anyone else concerned that the covid vaccine caused or precipitated their MG. My husband started symptoms approximately 30 days after his second dose. I would urge you to phone Pfizer and have them mail you their adverse event reporting form, and also to ask your doctor to report the vaccine – MG timeline to the CDC. As it’s rare, to begin with, the more incidences that are reported, the better chance that this rare side effect is ‘seen’ in the data. This might lead to salary loss compensation and coverage for medical expenses if the association becomes clear.

      • #17738
        Tom Tebault
        Participant

        Hello, I was a healthy 58 yr old , a prostate cancer survivor, since 2015, an avid gym rat, yard working, house remodeling kinda guy. It all changed after my 2nd covid shot, Pfizer. I got the regular side effects, tiredness, headache etc., but my face drooped, my voice went hoarse around 4 pm and I was beat. Primary care doc was stumped. Referred to an ENT, he was stumped, and sent me to a Neurologist. After testing and research on my own,  I was diagnosed with MG. I was crushed, I have not been the same since. If I had known the risks involved with the Pfizer vaccine, I would have never taken the shots. I firmly believe the shot gave me MG, I will not be taking the 3rd shot, or the 4th etc. etc. I am on Pyridostigmine 180 mg a day, it helps, but I’m still tired. I have a daily headache and nauseated, if I try to act like I used to, I pay for days after, like a hangover I didn’t enjoy getting. I’m still early into this, since April, and the sadness consumes me. I realize I have to live life differently or find a better solution or drug therapy. My Neurologist is overwhelmed, with other patients, he does not specialize in MG. There is another Neurologist in my city who has more experience with MG, I booked an appointment in April of this year, to see him in April of 2022. Ridiculous. For now, I will continue to research, look for a more natural approach to treating this disease. The vaccine is not for everybody!!!

        • #17739
          Joseph Betts
          Participant

          Hi Tom, I’m so sorry you have contacted MG. I was an active do it yourself guy until MG hit me when I was 52. I still tackle the big do it yourself projects but they have to be done in small increments with lots of rest in between. The Pfizer didn’t give me MG but it did hugely increase symptoms for about six months after receiving the first two doses in February.

    • #16541
      Carrie McDade
      Participant

      I was vaccinated while taking 20 mg of prednisone per day on January 30 and March 4 With the Pfizer vaccine. Due to my immunocompromised state, I am not immunized even though I am vaccinated. A recent Covid antibody test result was negative, meaning I have no antibodies. After each of the shots, I had a slightly sore arm and that was it. According to Dr. Fauci, if you are sick after you get the vaccine that means your body is responding strongly to the antigen, producing antibodies.

    • #16858
      Joseph Betts
      Participant

      Has anybody experienced increased MG symptoms since receiving Covid-19 vaccines? In January my MG was doing pretty well on 20mg of prednisone/day. I got the Covid vaccines in February. The first vaccine was just a sore arm, the second resulted in fever, chills and bad flu like symptoms. By March my MG flared up really bad and all of the MG symptoms increased about ten fold and still remain that way. I’m curious if the vaccines maybe jump started the MG autoimmune problem or if the timing is just coincidental. Any thoughts or observations will be very much appreciated.

      • #16861
        EDWARD CLAGHORN
        Participant

        My symptoms definitely got worse after then two Pfizer shots. Mainly blurred vision and for a short while double vision. Also, a dramatic change in my tolerance to heat and humidity. The Dr. raised my prednisone to 10mg and added CellCept. I scheduled a 4 day IVIG and then went back to the normal 2 day every 4 weeks. I am slowly getting better. Good luck.

         

         

        • #16862
          Joseph Betts
          Participant

          Thanks Edward. For what it’s worth I also received the brand Pfizer vaccines.

        • #16871
          Joseph Betts
          Participant

          Edward, after you are on it for a while please let us know how the CellCept works for you. I was on Imuran (azathioprine) a few years ago and it stopped my MG in it’s tracks. Unfortunately Imuran also stopped my bone marrow from making new blood cells so I had to give it up.

        • #16897
          EDWARD CLAGHORN
          Participant

          Will do. I was told that the CellCept would eventually replace the prednisone and the Mestinon. I would look forward to that.

        • #16941
          janell
          Participant

          I have been on CellCept for four years and it has made my life much more normal.  That’s all I take and I am now on a maintenance dose of 500mg twice a day.

          I have ONE Rituxin infusion in February 2018 and immediately weaned off Prednisone and Mestinon since then just CellCept. Just my experience.

    • #16869
      Amy Cessina
      Participant

      I had the Pfizer also. My arm swelled and hurt for months afterwards and seemed to spread. I’ve had body aches and pains since in my upper body. So my doctor did a bunch of blood tests. I am now positive for ANA antibodies. I’ve had autoimmune my whole life and never tested positive once for them. Now I have to see a rheumatologist and see what’s going on. Not sure if it was vaccine or not but very coincidental. Had an orthopedic doc X-ray and nothing wrong with my bones. It’s soft tissue. Doctor says she’s seeing people with same complaints as me.

    • #16873
      Deborah Whited
      Participant

      I posted on July 19th about my husband being diagnosed with MG in July.  Update:  He is now back in the hospital since August 18th.  He had been on Pyridostigmine and Glycopyrrolate after he was diagnosed in July.  Had really bad side effects.  Was taken off around August 16th.  Was put on 60 mg Prednisone started August 17th.  After just two days he was so bad I had to take him to the ER.  Was admitted to the hospital again.  Was put on ventilator August 20th taken off August 21 put back on August 22 and as of today August 24 is still on the vent and may be for a few more days. May have to have a trach.  Has so much secretions and can’t cough them up. I’m in a daze.  I pray he gets better. I still blame Covid and the stupid vaccine.

      • #16875
        Joseph Betts
        Participant

        I’m so sorry to hear about your husband. Do you mind sharing when he received his Covid vaccines? Do you think the vaccines my have initiated his MG?

        • #16940
          Deborah Whited
          Participant

          My husband and I had Covid in January.  His was mild.  Flu symptoms for 4 days.  He got his first Pfizer vaccine in February and the second in March.  He started having trouble swallowing in June in a matter of weeks he lost 25 lbs.  He couldn’t eat/drink/take pills.  He kept saying everything was going down his wind pipe.  It all happened so fast.  Doctors aren’t sure why it got so bad so fast.  Still on a ventilator maybe put on a trach next week.

    • #16890
      Samara
      Participant

      I got the Moderna vaccine.  The 1st shot just made me tired for a day.  After the 2nd shot, it felt like I had the flu for a day, and then the symptoms suddenly stopped about 24 hours after the shot.  It did not exacerbate my MG.

      I was pretty confused by the new guidance on 3rd shots.  After talking to my doctor, I plan to get a 3rd shot later this week.  My doctor said that the evidence shows that people taking immunosuppressants might not develop enough antibodies after only 2 shots and that this accounts for a lot of the “breakthrough” infections in vaccinated people.  The CDC website has really good info on this for anyone who wants to read the new guidance.

      I’m really hoping the side effects from the 3rd shot aren’t as bad as from the 2nd!  That was not fun.

      • #16933
        Pamela
        Participant

        To Samara:

        Thats interesting what your dr told you about immunosuppressants prior to getting the shots because that was my concern I brought up to my Neurologist prior to getting it. He said that it wouldn’t have the effect of impeding the efficacy of the shot.  I used my better judgment and would not take Prednisone. I only took it after having muscle pain and extreme weakness after the shot. I really hope my doctors and the hospital reported the adverse reaction to the shot! Take care!

        • #16947
          Samara
          Participant

          Hi Pamela.  What your Dr told you was consistent with the earlier CDC guidance.  The new guidance suggesting that immunocompromised people need a 3rd shot is based on new research.  Its unclear from your post how soon you started taking prednisone after getting that vaccine, but I suggest you ask your Dr whether you are supposed to get a third shot.

          Update on my 3rd shot: I got it yesterday.  Still had flu-like symptoms, but not as bad as with the 2nd shot.  I’m tired today, but no obvious exacerbation of my MG symptoms.

    • #16894
      Geoff Verschoor
      Participant

      I have had both shots of the Pfizer vaccine.  I had no reaction to either shot – not even a sore arm. My MG symptoms did not change at all.

    • #16896
      Bill Wheeler
      Participant

      I received 2 shots, Pfizer, no reaction other than sore arm for 2 days.

    • #16901
      Ann Marie Hetrick
      Participant

      I received both shots of Pfizer in Feb and March. The first shot I had a sore arm and was a little more tired than usual. That lasted about a day. The second one I felt like someone was punching my arm from the inside trying to get out. Two days later I had severe muscle aches and joint pain And more fatique. The symptoms kept getting worse I developed muscle weakness again and blurred vision. I felt almost like it was trying to go to double vision which I had for a month before I was diagnosed 8 years ago. I had to have 5 days of IVIG for 3 hours each day to help with the flare from the shots. The IVIG did get me back to where I was before the shots. I had been stable on 480mh of mestinon and 100mg of cell cept a day. I see my neurologist next week. I will discuss about the booster shot. I am leary because of the reaction I had. I too have been having some muscle knots that seem to move since the vaccine. So glad for this forum .

    • #16935
      Deb Hansen
      Participant

      I have ocular MG.  I am one of the few who, 6 weeks after the second shot, experienced my vision deteriorate so bad I started on  Prednisone.  8 weeks later I’m almost completely weaned off the prednisone and my vision had greatly improved.  So I’m of getting the 3rd/booster.  Am talking with my neurologist about my options.

    • #17468
      Barry C
      Participant

      I’m not (or wasn’t) anti-vax, but my MG symptoms suspiciously first appeared within a few weeks of 2nd Pfizer dose.  Could be coincidental, but I no longer stare side-eyed at those I know who are holding out on vaccine…I wouldn’t get it again.  My symptoms started with blurred and then double vision, progressed within a month to paralyzed soft palate, making my speech incoherent.  My primary doctor and ENT had no idea what was happening, they never even mentioned MG and treated me for dry eye and acid reflux, even as symptoms got worse.  As my breathing became affected, I became increasingly curious about MG, and honestly was desperate for an answer that wasn’t ALS or MS, so I went to ER and asked about MG myself and getting AchR binding/bonding blood work.  ER doc consulted with a neurologist and they agreed, and results came back very conclusively positive…still waiting for my neurologist to plant a flag on the diagnosis for some reason but she seems fairly convinced and started me on prednisone (30 MG a day, immediately resolved 90% of symptoms) and then pyridostigmine (180 MG a day).  The pyridostigmine hasn’t seemed to incrementally help and has immediately caused crazy leg cramps and spasms.  It seems a big part of this condition is dialing in the right meds, so I’m staying on everything and trusting my new neurologist for now.  A search on cramps and spasms is how I’d stumbled upon this group, great info here!

      Anyway, posting on this thread looking for others who’ve seen a connection between their MG onset and the vaccine.  I have a few doctor friends who have told me they’ve seen neurological and autoimmune symptoms/conditions that started right after vaccine, but we’ll likely never know for sure.

      • #17469
        Joseph Betts
        Participant

        I’m so sorry to hear that you contracted MG after the Pfizer vaccines. I’ve had MG for about 14 years and had it somewhat under control. BUT, after my 2nd dose of the Pfizer vaccine in February I had a bad MG flare up and haven’t nearly recovered back to where I was in January. I can’t handle the pyridostigmine either, it gives me terrible digestive problems. So far prednisone is about all I can tolerate but it’s long term side affects are also terrible. Good luck!

        • #17686
          Mike Anderson
          Participant

          I received moderna my last shot being April. In June I developed difficulty speaking then difficulty swallowing. After over 5 months of dr visits mri,s ct scans etc, I was diagnosed with mg this week and have just started treatment. Prior healthy work out walk work etc. now tired choke on food and liquids etc. my voice became completely nasal this week. So yes

        • #17687
          Barry C
          Participant

          Sorry to hear Mike.  Your experience sounds eerily familiar to my own.  The only positive was the 25 pounds I lost from anxiety, lol.  I was relieved to get MG diagnosis, as odd as it may sound.  My voice and swallowing are 95% better, and quickly so, after started prednisone.  I hope you respond well to treatment!

        • #17692
          Mike Anderson
          Participant

          Barry my dr as well is suspicious but says until enough cases are reported it will remain quiet. I’m hoping my treatment helps and I’m glad to hear you are better

    • #17480
      TheresaG
      Participant

      I was on 15 mg pred and 180 mg mestinon, somewhat controlling my seronegative MG.

      had 1 then 2nd Pfizer completed in February. I’m Somewhat comforted in hearing these stories as my MG exacerbated for the past 6 months. I was under great stress, moving remodeling , so attributed it to that.
      My response to vaccines were headache and feeling crummy for 1-3 days, nothing terrible. Have not had Covid.
      Husband received at same time and he had no reaction.
      3rd shot. – I had no side effects, husband felt terrible headache, achy, for 3 – 4 days.

      makes one wonder how it affects anyone. That said I have spoken to 5 top doctors and all recommend the 3rd vaccine. Especially over 65 and being on prednisone.
      my husbands cardiologist told us that all the people at the hospital since summer that are being ventilated and or death.

      It is tragic any of you that acquired MG post vaccine. I’m curious if you have autoimmune in your family where it was dormant until the vaccine/Covid.

      My neuro has just bumped my prednisone to 20 mg. I get really bad side effects, so we will be starting IVIG in the next week or so.

      while this steps out of the subject, I would love to hear from any of you who have reduced MG symptoms and or remission after IVIG. I will be doing 2 days every 2 weeks.
      thanks

    • #17481
      TheresaG
      Participant

      I started on 2×60 mg/day, then bumped  to 3. I began the cramps in 2, then the Gastro issues at 3. I would try to go to 4, and that caused lots of gastro.
      my neuro recommended taking 1,1/2,1,1/2 etc. this helped.

      Now 4 months later, I’m able to take 3.5-4 a day, and do 1,1,1/2,1. On about the 3rd day the gastric issues kick in so I will skip a pill or extend it an hour.
      so for me a gradual approach and allowing my body to acclimate helps. I will still occasionally get cramping but not the jump out of bed ones in the middle of the night.

      during the summer, watermelon helped a lot!

    • #17483
      John Ulfelder
      Participant

      I had my double Moderna rDNA vaccination in January and February at the local Fairfax County ealth Department offices. Had a sore arm for two days; no other side effects. Since I am on prednisone, I went to a Harris Teeter pharmacy for a Moderna booster (same dosage as each of the original shots) several weeks ago as soon as they were available. Had a sore arm for two days; no other side effects. I have always had a question about my level of immunity due to the fact that I had IVig treatment and plasmapheresis in April as part of my treatment for MG. I am concerned that the treatments may have weakened my coronavirus immunity, but there is not good way to find out (antibody tests are not reliable). MDs ae not able to say with any certainty. Thus, the booster. In addition, I recently received my annual flu shot as well. Generally, I think vaccines are an important tool for everyone. I have receeived vaccinations over the years for pneumonia (both vaccines), tetnus (DPT) every 10 years, Sbingrix (chicken pox) and depending on travel in the past Yellow Fever, Menningitis, Hepatitus C, etc. No serious reactions.

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