The Vaccine: Experience & Side Effects

[jodi-enders]

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.

[delores-gstling]

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

Delores Gatling

[rubyzmomicloud-com]

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!

[marguerite-thibeau]

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.

[lisa-blutman]

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.

[jacqueline-marquiz]

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. 🙏🏼☺️

[farhana]

I am taking cellcept and my neural suggested me not to take the vaccine now. I also have lung fibrosis. Is it safe for me to take the vaccine?

[joe-b]

I received the Pfizer shots in October.  The first shot was a sore arm.  The second shot was severe flue like tired symptoms.  Couldn’t walk far, hold head up, with fever.  Lasted about a day.  Three weeks after the second shot I experienced my first ever MG symptoms.  Eating lunch I had difficulty chewing swallowing.  The next morning I went to the gym and realized while warming up that I had lost all strength in my chest and shoulders.  By the end of the day I was slurring and my head and neck felt like 100 lb weight was pulling it down.  My symptoms progressed to where my diaphragm was being affected and breathing became difficult.  Two weeks later after blood work, CAT scan and MRI results concluded MG.  I will not be getting a booster.  I’ll never know if the jab gave me this terrible disease or not but it did wake it up.  Unfortunately the medical field now looks at us as collateral damage to the cause and are willing to look away, hopefully not forever.

[joseph-betts]

I sure am sorry you developed MG. I already had MG and my first two Pfizer shots were like yours. First just a sore arm, second shot was flu like symptoms for about a day. But then I had a very bad MG flare up that took about six months to recover from. I did get the booster shot about eight months after the second shot but fortunately another flare up didn’t follow the booster. You may want to consider getting the booster. I’d rather not contract Covid on top of having MG.

[quentin]

I feel your pain, I had my first Pfizer shot in September and 4 weeks after, and just before I was about to get my 2nd shot I have my first ever MG attack. My Neurologist says that I probably had it any way and now I should more than ever before have the second shot to protect my now compromised immune system. I however have serious doubts, my life is now changed forever and I feel a second shot could make me worse. And on top of having to come to terms with the nasty effects of this illness mentally and physically, I am now also restricted to where I can go, certain retail and I have lost friends over this. Our government is also in total denial that anyone is suffering from the vaccine’s effects and have promoted a campaign of hate against the unvaccinated no matter what the reasons.

[deborah-whited]

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.

[amy-cessina]

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.

[samara]

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.

[joseph-betts]

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.

[samara]

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.

[joseph-betts]

Samara, thanks for sharing!

[jacqueline-marquiz]

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

[mike-anderson]

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

[dianevmc]

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.

[alan-bridle]

I took your suggestion to report my adverse event to Pfizer. using their on-line form.

COVID-19 Vaccine Side Effects & Adverse Events (pfizersafetyreporting.com)

Unless our MG community reports incidences, I feel sure nothing about the interactions with MG will get studied.  I would like to know why MG severity interacts with these vaccines, and I suspect that won’t be looked into unless a lot of incidents like those mentioned in this forum are reported to the vaccine makers.

[tom-tebault]

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!!!

[joseph-betts]

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.

[ronald]

Tom, I was put on Lipitor 60 mg to lower cholesterol within 3 months I had MG this was back in 2015. I have not take Lipitor since.

My MG continues I have had my second booster Pfizer  and this time I have had symptoms for the last 4 days and I hope these will allow me to play tennis tomorrow which will be five days after the jab.

my meds are 5 mg pred mestinon daily 60 mg 4 times a day and before I got Covid a month ago I was taking 500 Mg myfortic twice a day plus IVIG monthly and this has kept MG under control.

when I got Covid I was asked to stop myfortic I was put on antiviral meds and this seemed to clear the Covid within 7-10 days and I remain off the myfortic as I feel well however I will talk to the neurologist today to confirm whether to restart myfortic

mestinon gives me urine urgency and I now sleep with a bottle as night visits to toilet could be four or more times

I now sleep with a apnea machine which makes a difference to frequencies as I feel that the constant waking is a trigger to urinate which if I am sleeping is less of an issue.

I normally play tennis doubles 4 hours  at least 4 times a week which I am very pleased about however the MG has caused the loss of strength in my monkey muscles in legs which means that I cant stand on toes or walk on heels which impacts on my running greatly.

supplements include Vit D,astaxanthin.krill oil, CoQ10 Ubiquinol green tea low carbs and red meat Mediterranean diet plants fruit and veggies and reduced sugar

I have spent many hours researching the net looking for reasons for this disease and natural cures and this continues with the hope that something will make a difference

I am very grateful because I am doing most of the things that I want to do except that i have a lack of confidence to travel and be away from medical assistance as I have experienced a crisis something that makes me realise how this MG can impact on one’s life.
I feel that fresh air exercise sunlight and most importantly connecting with others to make you feel like you are still part of normal society and this has been my reason for keeping positive

Thanks to all who share their stories as this is very reassuring knowing that this disease is not always the same for all people and we all react differently to meds

it would be perfect if one day medical science would come up with an injection that would suppress the one antibody responsible for theMG rather than suppress the entire immune system.

I have been given Retuximad which is a sledge hammer to the immune system meaning that the B cells are suppressed which are responsible for building new antibodies meaning that my response to the Covid vaccinations has been almost zero so I ask the question from the immunity Dept in the hospital what is the purpose of me having the vaccinations when I can’t build a immune response and they simply don’t know and continue to recommend to get the vaccinations which I have done.

all the best everyone we all need to place our trust in something to help us and medical science seems to be acting to do this

 

 

[carrie-mcdade]

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.

[joseph-betts]

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.

[edward-claghorn]

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.

 

 

[joseph-betts]

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

[joseph-betts]

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.

[edward-claghorn]

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

[jonathan-a]

I have had MG since diagnosed on 3-24-2020  … and have been taking MESTINON (3x 60 mgs daily) and CELLCEPT   (2 x 1000 mgs daily) only since then.  My nasty Steroid PREDNISONE was tapered and killed in November 2020  .. after horrid side effects of huge weight gain and high to the roof blood sugar readings.  I am in complete MG remission  … knock on wood  .. for a year now.

But my instructions and warning sheets for CELLCEPT do say that it could cause low red and white blood cell counts on your blood tests.  But CELLCEPT has kept me in complete remission for a year now  … without any side effects except acute onset INSOMNIA.   The jury still seems to be still out on  …. do you have INSOMNIA due to the side effects of MG (ie muscle pain)  … or the side effects of MG medications.  A possible question for future MG forums.

From some earlier MG readings, I saw that California MG Foundation was funding research on this topic at Univ of California at Irvine.  Has anyone heard of their progress on a answer for us ?????

[janell]

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.

[amy-cessina]

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.

[deborah-whited]

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.

[joseph-betts]

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?

[deborah-whited]

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.

[francisw]

My Covid vaccines were in March.  I first had MG symptoms in April and was diagnosed with MG in June.  Can’t say for sure but I thing vaccines may have caused the MG, or at least brought it to the surface.

[samara]

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.

[rubyzmomicloud-com]

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!

[samara]

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.

[geoff-verschoor]

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.

[bill-wheeler]

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

[ann-marie-hetrick]

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 .

[deb-hansen]

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.

[barry-c]

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.

[joseph-betts]

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!

[mike-anderson]

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

[barry-c]

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!

[mike-anderson]

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

[jonathan-a]

It took me 8 months to finally be diagnosed with MG on 3-24-2020  … but it was by a floor nurse, who had patients that had all my symptoms.  Every doctor who saw me was uneducated neurologically  … including three Banner neurologists. In my case, I lost 43 pounds in the first 6 months,  searching for my disease.  If your doctor does not have you on CELLCEPT,  ask about it.

The STEROID PREDNISONE IS REALLY NASTY   .. so try to get tapered off that as soon as your doctor can do it.   PREDNISONE sends your blood sugar to the roof  … and it is  famous for causing MG patients to gain 40 to 60 pounds of weight gain.  So you will gain much more than the 40 pounds you lost.  Ask your neurologist for his expert opinion.

[joe-b]

My experience is exactly like yours.  Started in October 3 weeks after 2nd dose.  Can’t chew or speak.  Progressed to arms chest and worst diaphragm.

[barry-c]

Sorry to hear Joe.  If it came out of nowhere, like me, I’m sure it shocking.  I hope the meds get your symptoms under control – took a week or two for me and I think it will be months of getting them perfect.  I find out next week if I have a thymus gland they can surgically remove…of all the strange things to hope for!  Merry Christmas!

[caroline]

My sister and my father were both vaccinated with Pfizer, two days apart in the same facility in the middle of July 2021. By August 1, 2021, they were both showing symptoms of autoimmune diseases.  It was my sister who was diagnosed with gMG.
Prior to vaccination, she was a completely healthy 47 y/o woman. Approximately 6-7 years ago she started cardio workouts 4-5 days a week due to being over 200lbs on a 5’5” frame. She changed her eating habits to healthier options, gradually and successfully lost 25-30 lbs in that time frame. She worked full time and Mom of two very active teens.
She initially presented with ocular symptoms (diplopia, ptosis, nystagmus), “nerves in her head “zapping”, and always feeling tired. She lost weight because she noticed she had difficulty swallowing. Sept 2021 she got to see a neurologist. (Mestinal 60mg was initially prescribed by the family MD. She only tolerated 2 days worth of medication before severe dizziness, diplopia, and tiredness presented.). Neuro MD restarted Mestinal 30mg twice daily, prednisone 10mg once daily. These meds had little effect on all of her symptoms. In fact, her symptoms seemed to change rapidly, usually the next week: worsening of vision, respiratory distress during the night, increase or decrease in saliva production respiratory distress upon walking one flight of stairs, 20 lb loss by the end of September. NeuroMD (in Sept 2021) ordered IVIG x 2 treatments which she finally received at beginning of Dec 2021 and showed no improvement even after 2.5wks. Fast forward to 21 Dec 2021 during a telephone appt NEURO MD ordered her to go to hospital ER due to an increase in gMG symptoms. CT SCANS, XRays, blood work normal. She was sent to MICU due to increasing Carbon levels in her lungs; ventilated via CPAP. PLEX treatments ordered: 5 treatments, two days apart. Received her fifth and final dose today. Internal medicine and thoracic surgery have been consulted and are now looking at surgery to remove her thymus. Has anyone else had an experience such as my sister’s?
How did you/family cope? I’m not feeling good about her prognosis.

Many thanks. Caroline.

[TheresaG]

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

[barry-c]

Theresa, how did IVIG work for you, I start in a few weeks and hoping it’s the key to getting off prednisone.

[TheresaG]

Barry,

IVIG was not a huge success for me long term. I developed side effects that outweighed any benefit.

i started VYVgart 2 months ago, which has been a game changer for me.
So simple, and it really made my life nearly normal until the dreaded Covid came and me on a 2 week hiatus after my second cycle began.

today I start again post Covid.
Hoping it  proves as beneficial once again. It was a slow improvement over the first 2 cycles.‘I’m now down to 7 mg prednisone and may stay at 5. We will see. That will be 2-3 months down the road so it is a wait and see.

Wish you good with IVIG. It helps many.

 

[TheresaG]

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!

[john-ulfelder]

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.

[alan-bridle]

I had my initial shots of Pfizer mRNA vaccine in January and February 2021 before I was diagnosed with MG.   I now realize that I had been having typical MG symptoms for several years, so my MG onset itself preceded the two vaccinations.

In August 2021 I had emergency surgery to remove blood clots from my left leg, followed by intensive PT and OT in a rehab hospital with outpatient follow-up.  I was doing really well in rehab until early September when sudden onset of extreme tiredness forced me to drop out of the rehab program.

In October I began to experience orthopnea, insomnia and some difficulty breathing even while sitting in a chair.  My oxygen saturation was barely over 90% for most of the day.  My cardiologist was treating my symptoms as CHF, based on evidence that I had had a “silent heart attack” several years earlier … but with no success.

I was diagnosed with MG by a neurologist in late October but had been less than a week taking Mestinon when I went for a third shot of Pfizer vaccine as a booster.   That may have been a major bad choice out of ignorance!  I went into full myasthenia crisis a week later and ended up in an ICU on a ventilator for almost two weeks.  My neurologist has since told me I was his second patient to have had rapidly worsening MG symptoms shortly after receiving an mRNA booster.

I had five sessions of Plex while I was in the ICU and I am now on  Mestinon, prednisone and outpatient IVIG.  I am doing very much better with all my MG symptoms improving but it’s unclear to me whether I have any increased immunity to COVID from the booster after Plex and IVIG.  Perhaps only well stabilized MG patients should get booster shots because the immune system “jolt” from the booster runs counter to what our MG treatments try to do.

It’s not obvious to me what is the best strategy for MG patients in the face of the highly transmissible omicron COVID variant.

[jonathan-a]

I have had three MODERNA shots with the last one on Tuesday 12-28-2021.  I have had no problems, except a sore right bicep for a day on the last one.    I started having MG symptoms on 7-25-2019, was diagnosed 8 months later eventually on March 24, 2020.   My undiagnosed MG was so bad, with eye problems and weak muscles and swallowing that I went to the hospital URGENT CARE on Feb 4th of 2020 and it took three hospitals and over four months to recover from being undiagnosed from MG and getting even worse.   So I had MG before the CORONA VIRUS PLAGUE ever arrived from China,  and did not get out of third hospital till 6-11-2020.

From what I am finding out from these comments, it almost sounds like the vaccines may have brought forward and exposed your still dormant and undiagnosed Myasthenia Gravis illness, and you could have been having MG symptoms and fatigue earlier.  I guess much more research and gathering of  MG patients information and their medical storylines  for every MG patient must be documented and maintained  ….  to help future research and a possible cure.  It is also a possibility that if patients have had MG for a while … before Covid arrived, maybe our MG meds,  for some of us,  unaffected by the shots,  helped us have minor or no ill effects.

[amy-cessina]

I had the booster shot and aside from arm pain, chills, and  fatigue for a day I was fine. I can believe there are triggers for MG being viral illness and vaccines etc. I don’t understand it completely but they say similarity with epitopes on acetylcholine  receptor and virus. So mistakes it  and makes the bad antibodies. My MG was triggered by a severe respiratory illness somewhat like covid but years before the pandemic. Strangely enough a man at my work visited his family in Wuhan  China of all places and came back sick , came to work sick and coincidently spread a viral pneumonia to his coworkers (actually my entire department) including me. I got MG very rapidly after contracting this horrible virus which sickened me for 5 months and three hospital visits to recover from the virus let alone MG.

[quentin]

I had my first Pfizer vaccine in September and 4 weeks after I had my first attack which has since been diagnosed as MG. I am now under a lot of pressure from doctors and friends to get a second shot, but I have serious doubts and it seems easy for people to give out this advice when they are not the ones in the line of fire. I am now taking Mestinone 4 times a day, and although my syptoms have improved, my eyesight is still not great and I struggle going outside in the daylight. My left arm and leg get tired easily, I have almost continuous leg spasms, and I suffer from acute fatigue. I have also developed tinnitus in my left ear which is constant. As an unvaccinated person (although I am single vaccinated) I can no longer enter any cafe or restaurant, cinema, barbers, public building or any business that chooses to bar unvaccinated people. My Neurologist refuses to even entertain the idea that there is any connection between vaccines and MG and the government has instigated a campaign of fear and hate. I now feel very uncertain about my future and find myself withdrawing from society everyday.

[wayne-eisen]

Hi Folks –

There is so much misinformation about covid and the vaccines. I’ve had my spleen removed after being hit by an suv. I’ve had a thymectomy. I’m getting 2 knee replacements in a couple months.

I’ve had 3 covid vaccines. The second one was somewhat painful for a day or so. The fact is that the unvaccinated are filling up the hospitals with covid.

Please leave a bed my surgery!6😁:))

[dianevmc]

Hi Wayne, there are more than a few people on the MG Forums who share that they willingly got vaccinated, and that they were harmed by the vaccine by developing MG. This is my husband’s experience. We have reported it to Pfizer and to the public health authorities where we live. We believe so strongly in the necessity of being vaccinated for covid, we have kept this by and large to ourselves, even with the devastating consequences of developing this devastating autoimmune disease.  I have not noted a single anti-vaxxer here. But people who accept the risks for the greater common good who are harmed, while rare, should be provided with proper financial and social supports.

[wayne-eisen]

Thank you, Diane, for your very thoughtful words. I totally agree that those who have suffered from the vaccine should be provided with proper financial and social supports. My ocular myasthenia was turned into Generalized Myasthenia Gravis from the interferon I was prescribed for another disease I had. I don’t blame my doctor since I hadn’t shared the fact that I was seeing double occasionally.

Best wishes to you and your husband! I’m very hopeful about the advances being made by pharmaceutical research into treatments for MG.

 

 

[dianevmc]

Best wishes to you too, Wayne! Hopefully they find something that knocks MG right out of commission.

[mary-jane-tynan]

2/28/221 I received the first Pfizer. Next day I was admitted to hospital. It exacerbated my MG. Worse MG symptoms I I was in hospital 17 days, 12 in ICU, on ventilator and feeding tube. First couple days I had 2 IVIG which did nothing and in ICU I had 7 plasma exchange. Needless to say, I will not be getting anymore vaccines. Was also in hospital in June and September for MG exacerbations. It was a rough year. UTIs were the culprit for the other two. One serious which I probably got in hospital. Exploring all avenues of infection.

just a note – last year I received the 2nd Pneumonia vaccine and short time later I ended up in hospital with pneumonia.

I am really thankful that so any of you had good experiences – but that’s not my story.
I am 72 years old and it seems the best place for me is at home now. I had to resign from two major ministry callings as a spiritual director due to not being able to bein a large groups with no covid antibodies.

Still, I felt the Lord was saying to me – I am not retiring you, but redirecting you.

We will see what 2022 brings. I have every hope.

Blessings and prayers for you all.

Mary Jane

[john-w-carnahan]

I had my second Pfizer vaccination on March 23, 2021. Fourteen days later my right eye stopped tracking to the right, resulting in double vision. The neurologist treated it as an MG exacerbation and we increased my Prednisone dosage from 7.5mg a day to 30mg a day. That had no affect so he prescribed two courses of IVIG, which also had no impact. I then lost all sense of smell and taste, a condition that has recovered, but only intermittently. Neither the neurologist nor a Neuro-ophthalmologist would attribute the exacerbation to the vaccine, simply recording it as an MG exacerbation.

I have had ocular MG since 1974 and have had many exacerbations during that time, but never like this one. Oddly enough, while in the ER for another reason, the double vision and the right eye tracking returned to normal. I have since managed to reduce the Prednisone dosage back to 10mg/day.

[phyllis-scullion]

I have had MG for just over 7 yrs I had 1st AZ jab in feb 21 severe flu like symptoms nausea and vomiting for 24hrs settled and back to normal after 3 days. 2nd AZ mild flu like symptoms for 24 hrs. 3rd Jab with Pfizer severe flu like symptoms and mild nausea less sever than with 1st AZ settled in 72hrs. 4th jab with Pfizer mild flu like symptoms for 24hrs. Overall I would say it had no obvious impact om my MG possibly more fatigued than usual but fluctuating fatigue is “normal” for me. Although I had 2 bad experiences with side effects it did not dissuade me from having vaccination for me the risk of unknown outcome of getting covid 19 infection was the main driver of having vaccinations.