[Carlos A Galindo]

Hey Richard,

My Myasthenia Gravis initial symptoms started back in April of 1999, found out all about it by July and had my Thymectomy in August. I was only taking Mestinon every 6 hours. By the end of the year in December, I decided to stop taking the Mestinon to see how I felt and noticed I had gone into remission. It felt really great and had about 97 to 98% of my normal body muscle functions back from what I felt was down to about 30%. This lasted for 15 years and unfortunately the MG symptoms returned in 2015 and I have not been able to shake them off. Now, I take Mestinon 60mg / 3 hours and 180 mg slow release at night. I also take 5mg of Prednisone, 1000mg Cellcept/day, and get Vyvgart infusions every 2 weeks. I am no longer in remission, but this medication regiment allows me to function at about 90%, and only issue is the up and downs between infusions. I wish you much luck in your search for your recovery goals, I’m sure you will find a sweet spot, at least if not a full on remission state.

[Carlos A Galindo]

Vyvgart is a great intravenous medication that helps me out tremendously on a daily. It is meant to be administered 4 times once a week and then go for 50 days without taking it. However, just like all other medications for individuals with gMG, it affect everyone differently. I was fortunate enough to be part of the Vyvgart study for 2 1/2 years in Portland Oregon, and right away I new it was for me. Unfortunately for me, I cannot go all the way to 50 days. The study required me to go back to the office after 30 day for evaluation and by then I was doing pretty rough. I never got a UTI, but my breathing was affected especially towards the end of the 20 day without period.

Now that it has been FDA approved I am starting to do a different regiment of it where it is administered 4 time once a week then followed by once every 2 weeks. I am extremely exited to see how my body reacts to this regimen.

My goal is to get off of some of the other meds I take, but we shall see. Currently, I take prednisone, mestinon, and mychophenalate in combination with the vyvgart. My side affects are minimal next to non. I might sweat more than normal, some headaches, and at times constant urination, but these are no comparison in dealing with the weakness. I wish everyone good health and much luck finding the perfect combination to alleviate your symptoms

[Carlos A Galindo]

I had surgery on my eyes, a procedure named vitrectomy back in 2016 due to eye floaters. The results were great in one eye and extremely bad in the other which happened to be my good eye. My vision went from 20/20 to 20/25 (I think), either way, I needed the surgeries. Now I am dealing with really bad droopy left eye lid that really has not gone away with IVIG treatment for over 1 year. I recently started Vyvgart and the first month it seemed to have helped at least for the first week or so after the infusion month. Now I am starting my second dose (1week in) and have been struggling with my eye lid really bad. BTW, my daily medicine dosage are 4-5 mestinon, 1 time release mestinon (at night), 5 mg/day of prednisone, and 2 x 1500 mg/per day of cellcept. I hope someone mentions if they’ve gone to a specialist to have surgery due to MG with ptosis issues.  i am new to prism glasses for double vision, I’ll have to look into it and bring it up to my neurologist.