Patricia Jacobs
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I was diagnosed with MG in 2001; only some leg and shoulder weakness, occasional double vision. On Mestinon.Remission 2020; off Mestinon completely.
Then got J&J vaccine 3/25/21; 4/06/21 in ICU for 9 days with Myasthenia Crisis.Never had breathing difficulties before. SOB continued. Hospitalized again 5/25/21- 6/11/21: Crisis, acute kidney failure, hemorrhaging, anemia. SOB continued, slight, slow improvement until Pfizer vaccine 12/14/21. Needed hospitalization within 2 weeks but declined due to high Covid in hospitals. Started 10mg prednisone, Mestinon 120mg 5x day. January hospitalization still advised; declined, prednisone upped to 15mg.Then 20mg. By 3/25/22, couldn’t speak after walking short distance, couldn’t sit up or walk at doctors office; directly admitted to hospital for 6 days, 2 in ICU. Currently on 30mg prednisone and 60mg Mestinon 5x day. Breathing is the major issue. Shoulders are weak but not a big deal; it’s being very SOB and having to sit after only 5 minutes of activity that is the problem and it’s not getting better.
There are no doctors in my state who know how to treat MG; finally found one in Boston who said I’ve been under-treated. He has recommended Vyvgart.
I’m always in the “only 2% of people get these reactions “ group and am allergic to so many meds. I am very apprehensive about trying Vyvgart and would like to know if anyone has experience with it, and if it helped breathing, and were there any adverse reactions?
I am certain that the J&J vaccine triggered the breathing issues and crises.
My doctor at the time agreed, even though there were no reports/studies suggesting this.
Ironically, the hospital vaccination site set up a clinic to administer the shots to high-risk patients and they used J&J, the one with the lowest efficacy.
I will never forgive myself for taking it, as I had done some research and decided the MRNa was the better choice. But when I got there and they had the J&J I let myself be talked into it. I don’t blame the medical staff; I blame myself.
I am very concerned that the vaccine as a trigger for MG is not widely known.
BUT: back to my questions about Vyvgart: anyone have any input? Thank you! -
Quentin, you might want to look into finding a neurologist with the help of MGFA. We all need doctors who know what MG is and how to treat it.
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Quentin, Please relate your experience to the CDC. Have you heard of VAERS? It’s a reporting system. We all need to report ir they won’t know how prevalent this reaction is!
People are getting MG and those of us with MG get Crises triggered.
My life is turned upside down too.
I now have a heart arrhythmia that might be causing breathing problems too. I can’t function any more, gasping for breath after just a few minutes of activity.
My symptoms developed in 14 days too, after both vaccinations; J&J, then Pfizer.
The respiratory therapist at the hospital now has a horrible case of rheumatoid arthritis and gies for infusions, and she’s seen patients with the same stories as ours.
Please report! And best wishes…
Pat -
Lourdes, I hope you are well. How did you do with the Vyvgart? Any side effects? Did it help, and if so, which symptoms improved? I am supposed to try Vyvgart and am apprehensive. Thank you for any information!