[luz d sharpe]

Well after almost three years avoiding this virus it finally got me in the beginning of august. I started with a headache, that would not go away, by day two I had a raging fever, body chills, a horrendous sore throat, a nasty cough and my entire body ached. I called my neurologist on day two because I felt my breathing becoming an issue. ( I have seronegative mg, which we barely have control over.) I was sent to the emergency room where they were expecting me. They had neuro critical care team see me, who admitted me immediately contacted my neuro who told them that they would most likely need to intubate soon (I’ve been intubated over 8 times because of my mg.) they tried the bipap machine but to no avail, in less than 8 hours I was intubated. I was treated with Remdesivir for the covid along with 125mgs of steroids daily and a round of ivig for the mg. I was intubated for a week! Could barely move any part of my body. It took a little over two weeks but I beat it, barely. I’m home but I can do very little before I am completely exhausted and done for the day. I’m still coughing and still have no sense of smell or taste. I have muscle weakness that I am seeing physical therapy and occupational therapy for. Still do not feel like myself and no where near my baseline.

[luz d sharpe]

I am seronegative and I just finished my first cycle of vyvgart yesterday. I have tried ivig and plasmapheresis and have had serious anaphylactic reactions to both. I have been in a cycle of flare ups/exacerbation/crisis since my diagnosis in March of 2019. I have been intubated eight times!!! I have been on high doses of prednisone since the beginning along with Azathioprine. I am truly amazed how much better I am feeling. Our goal (my doctor and I) is to get a month maybe a month and a half before having to do another 4 infusion cycle. ( I have tried both Mestonin and cellcept and my body couldn’t handle either. ). We did have to jump through hoops with my insurance company, but in the end the did approve it. Hopefully my body will continue to accept it and respond well to it. Hang in there my seronegative friends!!! Hopefully soon it will be approved for us!

[luz d sharpe]

I’m very surprised they have denied the ivig…usually that’s the go to when oral medications are not an option. I would reach out and see what their “other options” are. Fingers crossed that you and your doctor find something that works…I understand your frustrations. Hang in there.

[luz d sharpe]

Have you tried cellcept? Azathioprine? Low doses of prednisone? Has your insurance company made any suggestions, since they are denying your infusions? Are you seronpositive or seronegative?

[luz d sharpe]

Thank you! Yes there is hope!!! Hopefully it will be available to all seronegative mg patients that are struggling with lack of positive treatments!