anyone tried injectable Vyvgart Hytrulo?

Ernie, your experience with gMG is similar but not exact to myself and I'm sure many others. I had 5 or 6 series of IVIG treatments and entered the ICU of my local hospital (NM) in 2024. I then had to be medevacked to another state (Utah) to get more IVIG and Plasmapheresis. I haven't lost my sense of taste but some foods taste a bit off. Today I go for my third injection of Vyvgart Hytrulo (one more after this). It has been two weeks since my first one and no improvement, but I was told it takes four to eight weeks to be effective.

I hope you are finding some relief by now. I know how the weakness affects your life as it does mine but I'm retired and don't have to work. Good luck.
Here is one of my images that might cheer you up.

I am taking the vyvgart hytrulio, had so many side effects to prednisone, wanted off it. Have had 3 rounds, and have 3 to go, have to take a 50 mg of steroids with each shot as found I am allergic to the vyvgart. Still weaning off prednisone for another 3 weeks, takes forever to taper off. The meds they are replacing this stuff is mycophenolate, he said it takes 6 months to be working, using 2000mg. Think my biggest problem is dry eye, probably caused by steroids from what I have read.

Just started my second round of this treatment.
History: Was diagnosed with Ocular MG over a year ago. Fortunately, was in hospital when a doctor with specialty in MG examined me and made the diagnose.
He took me on as a patient with the understanding he treated only MG patients
with the occular component of MG.
Within two weeks of diagnosis and prior to first true medical appointment with doctor my left eyelid had completely closed with the right eyelid half closed rendering me almost blind. Driving was impossible, so was work (I was doing accounting work).
The doctor 'dialed' in my medication and my eyelids completely opened within a week. It was an amazing difference. About two weeks later my wife had to call the doctor. The occular symptoms had expanded into general or body symptoms part of MG.
I was referred to another local neurologist with general MG experience. The symptoms i experienced when the MG expanded into general body category was equally scary as losing your eyesight. At dinner (out of the blue) I was unable to completely chew my food, had extreme difficulty swallowing my food, saliva production increased almost ten-fold (I was choking on the food i was trying to
swallow and i began to slur my words. By the time the next morning had arrived
I began to have issues with balance. All total i had six different cranial nerves affected at one time with MG.
I now have 3 neurologists, one at a teaching hospital, that are prescribing meds
and have had 3 MRI's, several CT's along with extensive cardiac and pulmonary exams to rule out involvement in those areas. I have had issues with breathing and chest pain. All of this within the first year of initial diagnosis.
Needless to say my lifestyle has taken a complete change. I am incapable of performing any manual labor over a couple of minutes, work is impossible ( i retired in January of 2025 at 70 years of age). I like to work in yard. I can pick up a shovel and/or rake but within about 2 minutes I am completely worn out. It is like someone placed a hundred pounds of extra weight on me.
The current medication list fills an entire page including previous IvG treatment (which produced outstanding results almost immediately) This treatment was done in the hospital with a nurse standing over me the whole time. The treatment took about 2 hours and two bags of IV fluid. My energy level increased, breathing relaxed along with lower BP readings. They kept me overnight and release me the next morning.
The IV treatment involving Vyvgart Hyrrtullo was started in November of 2024. The treatment is 4 weeks of (1 day a week with infusion at home with nurse) treatment, 4 weeks off and then another 4 weeks of infusion at home. With Medicare and United Healthcare Insurance my cost last year was $2500.00 out of pocket (includes medicine and nurse coming to house - she is at the house for about 3 hours each treatment). This year the cost dropped to $2000.00 out of pocket. Just completed my first out of four treatments for this round.
Results (REMEMBER THESE ARE MY RESULTS AND USE ONLY AS A REFERENCE)
No immediate change in symptoms or even mental outlook. I had high hopes
just like anyone would have using a 'new' drug or treatment protocol. There are times symptoms fell less intrusive but they are still there.
Examples: Still feel loss of balance but it is easier to walk and stand still with feeling the need to set down. Do not get me wrong i still have to stick my hand out and touch something to get a third point of reference. But the overwhelming sense of 'i am going to fall' is gone. Eating/swallowing problems had decreased but are still there. If you haven't had this issue yet PRAY YOU NEVER GET THEM. The taste of food completely goes away. Everything including water tastes the same. THE ABSOLUTE WORST PART IS: as you chew your food you get a sense of how much food you are going to swallow and your body prepares the back of your mouth, your throat and how much effort it is going to take (muscles) to swallow your food.
Remember the saliva i mentioned earlier. As you commit to swallow, it feels like your saliva production increases 1000% percent. This all happens within a second, you have no time to prepare yourself mentally or control your muscles of mastication/swallowing. As a result you physically swallow much more than you expect and you basically choke on yourself. That is why i eat at home (in private) most of the time. The 'choking' does a number on you mentally and you start to question yourself and/or your capabilities. When this happens to you in public you look either physically or mentally incompetent. You look like you have no control over yourself. Hence, mostly eat at home now.
I am already taken up to much of your time. If your want to know more especially about other areas of your life affected by MG let me know and will be happy (????) to share them. MG is a disease that will strip you of your self worth if you let it. Be prepared, find strength in yourself and remember GOD put you here for a season and a reason. Just writing this letter gives me purpose and a reason. Thank you for that.

ernie williams